Archive for Childhood

For the Young Literal Thinker: Good Children’s Books about Idioms

July 27, 2011 Rachel Childhood, Literal Thinking, Parenting

A few weeks back, my post On Literal Thinking was republished on Shift Journal. In response to it, a commenter made the following excellent point:

I wonder sometimes if all the anecdotes that describe autistic children as literal thinkers may be creating a self-reinforcing stereotype. Any young child, whether autistic or not, who had never seen broken dishes wouldn’t know how fragile they were. The child might reasonably assume that if she had been told to toss them, they must be made of something that wouldn’t break, just like a rubber ball or other toy. In most families, if that happened, nobody would think much about it after the mess was cleaned up. But if the child happens to be autistic, the story ends up on the Internet as an example of literal thinking. That leads to more parents of autistic children posting such stories, and so forth.

She’s right about the dangers of some of the anecdotes that make the rounds on the Internet; after all, not everything an autistic child says or does is atypical. But in this case, there is a difference between the way an autistic child and a non-autistic child might respond to an idiom that he or she has never heard before.

In the example in my post — about a mother asking her daughter to “toss the dishes” into the sink — the child was definitely old enough to know what happens to dishes when you throw them. My guess is that the literal meaning took over in the child’s mind and got in the way of practicalities. When I look back on my neurotypical daughter’s early years, I have no memory of her misreading an idiom in that way.

In fact, I don’t remember her taking idioms literally at all. If she’d never heard the expression before, she’d probably look at me and say, “Mom! What are you TALKING about?” So, for example, if I told her to “shake a leg,” she wouldn’t just shake her leg, as an autistic child might. She’d know that the meaning was figurative and that she didn’t understand it. Similar anecdotes about autistic kids usually don’t reflect that understanding.

The whole conversation got me thinking about a couple of children’s books I once bought to teach my daughter about idioms. They were on one of the homeschooling curricula that we made use of, and they turned out to be a lot of fun. It occurred to me that the books might come in handy for parents who want to teach their autistic kids what idioms mean and how they work, so I thought I’d share a little bit about them.

The ones we have are called In a Pickle and Mad as a Wet Hen, both by the wonderful Marvin Terban. (He’s written two others — It Figures! and Punching the Clock — but since I’ve never read them, I can’t vouch for them.) Both In a Pickle and Mad as a Wet Hen explain common idioms very clearly and succinctly, and both are full of great illustrations to delight the visual thinker. In a Pickle contains fewer idioms than Mad as a Wet Hen, but is still a very useful book. I got them both because, well, the more idioms the better, right?

Here are couple of interesting examples from In a Pickle:

White elephant: A totally useless possession that you’d like to get rid of.
As the book explains, the expression derives from ancient Siam (now Thailand). In days long ago, a white elephant was considered sacred. When the king was angry at someone, he gave the person a white elephant. Because it was sacred, the beast could never be made to work. It would simply lounge about until its owner ran out of money caring for it.

To get up on the wrong side of the bed: To be grumpy
As Terban tells it, the ancient Romans thought that it was unlucky to get up on the left side of the bed. (The Latin word for left is sinister.) So if you got up on the “wrong” side, you’d probably have a very bad day, which would make you grumpy!

And here are two of my favorites from Mad as a Wet Hen:

To pull the wool over someone eyes: To trick someone
According to the book, in the days when judges wore big woolen wigs, a judge’s wig might sometimes slip over his eyes so that he couldn’t see. A lawyer who thought he had tricked the judge might brag that he had “pulled the wool” over the judge’s eyes.

Are you pulling my leg?: Are you trying to fool me?
Terban explains that, in bygone days in England, a robber would use a cane or a wire stretched across the sidewalk to catch a person’s leg. Of course, after the person fell, he was robbed.

Neither book explains the derivation of each and every idiom, but there is enough information in each one to keep things interesting.

I especially like both books because most of the idioms and their explanations are accompanied by humorous illustrations that reflect the literal meaning of each expression. While I tend to think in text, the text usually brings up a strong visual image, and reading these books sometimes feels like looking at a (very stylized and artistic) reflection of what goes on in my own mind. So, whether your child is a text-based thinker, a visual thinker, or both, these books may very well reflect the ways in which his or her mind works and, as such, may provide a good introduction to the world of idiomatic meaning.

© 2011 by Rachel Cohen-Rottenberg

Share

13 comments

Living with an Open Heart

May 7, 2011 Rachel Childhood, Communication, Friendship, Parenting

My daughter has been going through a difficult time in these past couple of months. I don’t want to share particulars, except to say that she’s dealing with having been abandoned by someone she was very close to — someone to whom she was a very loving and caring friend. It happened very unexpectedly, without warning, and left us all reeling.

Ashlynne has dealt with some difficult and heartbreaking things before, but there is something going on here that feels much different to me. It feels like a loss of innocence, as though her childhood has abruptly ended. Perhaps it’s because it’s yet another ending — like the end of high school, the end of living at home, and the end of the arc of her first eighteen years. Because it came so quickly and so painfully, it’s resonating across all these other endings.

It’s like a tear in the fabric of Ashlynne’s past. It hurts to imagine her going off to college without the tie to the past that this friend represents. There’s barely a thing that Ashlynne owns that doesn’t have the memory of her friend intertwined with it from the past five years of their lives together. And so, her friend’s absence is always palpable.

We’ve had a number of long talks about the situation, and Ashlynne is aware that she has done nothing wrong. So we’re not spending any time on second-guessing and self-blame, thank God. Instead, we’re starting to talk about the kind of people we are in this family, how it feels when people take and walk away, and how to care for our hearts and minds in these kinds of situations.

I have been in Ashlynne’s shoes many times in my life. It’s in my nature to be helpful. It makes me happy, and it rarely feels like a burden. And even when it does feel like a burden, it gives me satisfaction to carry it. Many times, I’ve been the person to give with an open heart, only to find that the other party is nowhere to be found when my hour of need arrives, or when it’s time to celebrate a joyful event.

I’m not talking about helping by giving money or material things, as I don’t give either away very easily at all. It tends to complicate friendships, and besides, I’m eminently practical and sensible when it comes to both. I’ve never been ripped off or taken advantage of financially, and I never will. In financial matters, it’s in my nature to be deeply suspicious and to exercise an abundance of caution.

But emotionally and spiritually, I flow outward. I used to think this basic approach derived from my autism. I used to think that, because I have neither the ability nor the desire to manipulate people, I’m just open to what they need and how I can help, and that I get blindsided when they don’t reciprocate.

But I was wrong. It’s not the autism at all. My neurotypical daughter, my neurotypical ex-husband, and my neurotypical present husband all operate just as I do, and they’re all just as capable of being blindsided. None of us thinks that life is all about us, none of us holds back from wanting to help people in difficulty, and none of us, in our heart of hearts, really expects things to go as badly as they sometimes do.

My ex-husband used to sum up his relationships with other people by saying, “I’m the guy who always picks up and drops people off at the airport, but when it’s my turn, people just tell me to take a taxi.” I spent a lot of time in that taxi with him, literally and figuratively, over the thirteen years of our relationship, so I know that he’s right.

My present husband is also a very generous person whose first impulse is always to ask how he can help. What’s troubling is how often people take that help completely for granted. He does it all so lovingly, so patiently, and so well that people often think that he’s some sort of higher being to whom it all comes naturally. They’ll recite an encomium on Bob and what a wonderful person he is, but deep down, most of them have no understanding whatsoever that he has worked very, very hard, throughout his life, to have the spiritual and emotional discipline to do what he does. It’s not something you’re just born being able to do. Yes, he’s got some great raw material to work with, but without all his years of spiritual and emotional work, all that great raw material would have come to nothing.

And what’s even more upsetting to me is how few people understand or appreciate how much the giving takes out of him, and how much support he needs.

And my daughter is all about counting her blessings and wanting to share them with others. She is welcoming, generous, and caring. I don’t think it ever occurred to her that what just happened was a possibility. Sure, people can have a falling out, but you’ve got some warning there. You know that things are not good, and you’re in conflict. In this situation, there was no warning. Absolutely none. It just happened, like a piano being thrown out a fourth-story window and barely missing your head.

It tears my heart out. It really does. I feel sad, and I feel well and truly pissed, too.

But all I can do, in addition to supporting Ashlynne emotionally, is to work through the current issue with an eye to how to approach these situations in the future. So I’ve been reflecting on relationships lately, and on the things I’ve learned that might be helpful to Ashlynne as she enters adult life.

There are some situations in which you can make a conscious choice to give, without any expectation of reciprocity. That’s a very high ethical level of giving, and perfectly appropriate in some situations. It’s not a bad way to live, so long as you’re aware of what you’re doing and why.

But you can’t base a friendship or an intimate relationship on that kind of imbalance. There has to be reciprocity. So I’ve learned, over the years, to scope people out better. I don’t just pour out all my giving at once anymore. I see what the other person is capable of, and I try to match it. It’s never perfect, but I’m getting better at it. So I’ve suggested to Ashlynne that she stay mindful of holding a balance and that, when the balance is upset, that she be aware of it and how to bring it back to center.

Of course, part of what feeds an imbalanced relationship is a failure to articulate needs. When I don’t assert my own preferences, I have no way to gauge the other person’s level of commitment to me and what he or she is truly capable of giving. In the absence of that information, there is no way to adjust the level of giving in a friendship. I just end up “on” until the other person is done taking or I’m exhausted, both of which often happen pretty much simultaneously.

It’s been good to look at these things, because it means that I can help my daughter along the path. But in the final analysis, everyone in this family is going to be open to the kind of hurt that Ashlynne is going through right now. I don’t think there is any way to completely protect against it without closing off and distorting our true natures. We can take steps to avoid these kinds of situations, but we’ll never be immune to them, because we will so often take the emotional risks that come with doing the right thing.

I’ve come to accept the situation for myself, to some degree, but I’m having a much harder time accepting it for Ashlynne.

In my worst moments, I feel like an absolute fool for having raised Ashlynne to be a kind and ethical person. In the past week, I’ve actually thought to myself, “What an idiot I’ve been! If only I’d just said to her, ‘Honey, just go out there and take from the world. Giving is for saps.’” Instead, throughout her entire childhood, we discussed Torah, and did role ethical playing, and made a commitment to being the hands of God in the world. Sometimes, it feels as though I’ve sold my daughter a bill of goods.

But I know I haven’t. I know I’ve taught her about what’s highest and holiest in life. The solution to the madness of “me, me, me” isn’t to become part of the problem. If I’d raised my kid that way, I’d have done major damage to her essential nature — and to mine.

So am I a fool to be giving in a world in which so many people just take? Perhaps. But I’m beginning to realize that if I’m a fool, I’m a fool in the service of what’s right. I’m not big on the question of belief in God, but I am very big on my experience of God, and doing right is the experience of God in the world for me. In the eyes of the world, maybe I look like a fool to think about giving before taking. But I’m learning not to care. Doing what’s right makes me feel safe, and sane, and connected to something greater than myself. The opinions of other people really can’t hold a candle to that feeling.

So screw the wisdom of the world. Yes, there’s a lot of difficulty and disappointment on this path, and sometimes, I wish I could save my daughter from it. But I know that I’d be interfering with the beauty and wonder of who she is, and with her connectedness with all that is, and that, I will never do.

© 2011 by Rachel Cohen-Rottenberg

26 comments

A Haunting Photo

December 13, 2010 Rachel Childhood, Eye Contact

I want to share a photo of my father. In the photo, he is about eight or nine years old, and he’s kneeling behind his younger twin siblings. Except for a photo taken of him as an infant, it’s the only childhood photo I’ve ever seen of my father.

I’ve been haunted by this picture for many years. Once I started realizing that my father had Asperger’s, I finally realized why. My father is doing something with his eyes in this photograph that makes me hurt inside:








































He’s looking at the camera, and not looking at the camera, at the same time. He looks like he’s in pain and trying not to show it. His siblings are looking directly at the camera, while my father looks almost as though he’s between worlds.

He almost always looked that way, like someone trying desperately hard to plow ahead while the world pressed in on him with a bewildering amount of intensity. I don’t know that it’s possible to forgive the things he did when he was alive, but I understand him now. He’s no longer my frightening and tyrannical father. He was someone in constant pain. He felt completely alone and vulnerable, all the time, every day, for his entire life, and he had no words for it, and he had no one to talk with about it, and he had no community, and he had no support. He was the man of the house—that was the beginning and the end of everything—and he looked straight ahead into the world and tried not to flinch.

It didn’t work. His pain came out in soul-crushing ways.

I complain a lot about the ways that the medical profession pathologizes us, but we have a big advantage over my father. We have one another. And the children coming up will at least have the words to describe who they are and what they feel, even if those words miss the mark. It’s a beginning. It’s something to work with.

It’s more than my father had.

© 2010 by Rachel Cohen-Rottenberg

18 comments

I Am So Not Like the Other Soccer Moms!

December 5, 2010 Rachel Childhood, Parenting

Now that my daughter’s high school soccer career has drawn to a close, I’ve had some time to reflect upon the ways in which I fit in—and didn’t fit in—with the other parents.

Of course, when my daughter began playing soccer six years ago, I was right in the thick of things, chatting it up with the other moms. It was four years before my diagnosis, and Ashlynne had just started regular schooling, so I was very keen on being in the midst of it all. From the outset, though, three things set me apart:

1. For the first few years, I brought food for my daughter and her teammates to every game. Sometimes, another mother brought food, but I brought food every time. I mean, lunch at school started at 11:30 am, and the soccer games started at 3:30 pm, and those girls couldn’t play with their blood sugar running low, now could they? So I brought chips, or popcorn, or peanut butter and crackers, or graham crackers, or chocolate chip coookies, or whatever looked quick and delicious at the local market.

Once Ashlynne got older, I stopped, mainly because I wanted to give her space to be with her friends—and also because I figured out that the kids had brought food to school, and so the risk of their collapsing on the soccer field was minimal.

2. I tended to talk with Ashlynne and her teammates in a very down-to-earth way. For example, this fall, her team played a game that was just spectacular. The girls were passing to one another beautifully, and Ashlynne was making a series of fantastic saves in goal. After the game, I went over to Ashlynne and her best friend, and said, without any preface whatsoever, “Day-um! You guys were on fire today!”

Her friend looked at Ashlynne, smiled, and said, “I love your mom!”

Apparently, not all the soccer moms open up a conversation with “Day-um!”

Who knew?

3. Most of the other parents socialized during the game. Now, I tried socializing, too. I did. I sat in the bleachers with the other parents, and I did all right.

The problem was that most parents were so busy socializing that they missed what was going on in the game. They talked about anything and everything, and they rarely talked about soccer. My breakpoint came when one of the girls scored a goal, and her mother missed it completely. She stopped talking long enough to say, “Oh, did Lucy get a goal?” as though it were a distraction from why she had come. Then, she just picked up talking where she’d left off.

I just couldn’t understand why socializing took priority over watching the game, but I knew one thing for sure: I was there to watch my kid play soccer. So, I began spending each game on the sideline, camera in hand, taking photos and shouting encouragement to the team. When Ashlynne started playing goal, I’d stand on the sideline on her end of the field, snapping photos like crazy and shouting out support. I had a friend come to a game with me once, and she kept trying to talk to me through the entire game instead of watching it. I’m not sure how she missed that I’d invited her to watch my kid play soccer, but clearly, socializing was far more important than the action on the field.

Now, I will admit that it was a big relief to get away from the socializing, because it made the sensory experience of the game so much more enjoyable. But I know that my desire to have some peace and quiet to watch the game wasn’t just a sensory thing, because Bob did exactly what I did. He stood on the sideline, cheering the kids on, for exactly the same reasons. He was there to see the game, not to yack with other parents. At halftime, he’d go and schmooze with the other adults while I got some quiet time to myself, but other than that, we were both focused like proud parental laser beams on the game.

I’m very glad that I paid attention. It’s all gone so very quickly. It’s hard to believe that six years ago, Ashlynne ran from the ball, and that since then, she’s been named her team’s MVP, become a co-captain, and won this year’s Excellence in Soccer award at her school. I have a lot of good memories of watching her on the soccer field, and they’ll stay with me forever.

© 2010 by Rachel Cohen-Rottenberg

13 comments

My Path to a Strong Sense of Self, Part 1

November 11, 2010 Rachel Childhood, Judaism and Jewish Life, Spiritual Beliefs

Spoiler and trigger warning: In this post, I talk about having survived childhood abuse.

For the most part, having survived abuse is not a topic that occupies my mind very much anymore. I still have post-traumatic stress issues that I will probably deal with for the rest of my life, but they don’t inhibit my ability to navigate. I work with them or I work around them, depending on the day, and being able to do so has become a source of power and self-confidence.

In this post, though, I’ll talk about the abuse. I’ll talk about it because the abuse itself once threatened my ability to have any sense of self at all, and because struggling with its legacy has been the key to having a secure sense of who I am.

I was emotionally abused throughout my childhood. I was also physically abused from the time I was 4 until I was 19, and sexually abused from the time I was 11 until I was 19. The abuse stopped after I fled the scene, moving three thousand miles away to California. I no longer have any relationship with anyone in my original family, as my blood relations are either in denial or simply don’t care.

I want to say outright that I don’t have any kind of hierarchy in my mind about which form of abuse is “worse,” because for me, the only important dividing line is the one that separates being safe from being unsafe. For a long while, ranking one kind of abuse as worse than another became an exercise in minimizing and controlling my pain, and it was a great relief to stop.

I finally gave myself permission to stop over twenty years ago, after sitting in a support group with a woman who was actively recovering memories of the most hideous abuse imaginable. Each of us got a session in which to tell our stories, and when this woman told hers, everyone else in the group responded with a variation of, “I feel like I don’t even have the right to be sitting here with you. My abuse wasn’t nearly as awful as yours.” Her mindful, compassionate, and altogether accurate answer was, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.”

One aspect of her struggle that we all shared was the visceral sense that the abuser had somehow taken up residence in our minds, our hearts, and even in the cells of our bodies. Particularly regarding the sexual abuse, I felt that I would never be able to rid myself of the way it pervaded my awareness of my own being. For a long time, I felt as though the abuse were circulating through my body and that with every beat of my heart, it was making me feel dirty and broken. How could I possibly heal? How could I possibly keep up with the messages of self-hatred that were spreading inside me? How could I tackle them quickly enough to defuse their power? Having been born with a very healthy sense of outrage, I was very, very angry that the ugly messages seemed to have become an inextricable part of me, and I rebelled against them even when I felt utterly done in by them.

As it turned out, rebelling against them helped me see that the idea that I had been dirtied and broken was an illusion—that it was a feeling, not a reality. I came to this understanding through teachings from my own culture about the purity of the human soul. I know that not every culture has these teachings, and I know that there are many paths to healing. This one just happens to be mine.

Judaism teaches that we are each born with a pure soul, that we each die with a pure soul, and that nothing that comes between our first breath and our last breath can change that. At the core of this concept is the belief that when we are created, a spark of the Divine enters us and becomes the soul. Because the Divine can never be broken or made incomplete, the soul within us shares that indestructibility and wholeness. And so, whatever is done to our bodies, our souls are perfectly resilient and incorruptible.

As I meditated on these things, I came to feel that much of the evil that was done to me consisted of making me forget that I am perfectly fine. I have struggles, yes, but I am not the same as what has happened to me, what has been done to me, and what has terrified me. At the core of my being, through all the pain and confusion that clouds my path, I am separate from the storm, and I am perfectly whole. In these teachings, I found my connection to the Divine, not as a self-other relationship, but as a deepening sense of immanence, awareness, and shared existence. I am no longer religious, as I once was; I seem to have little need for most religious ritual or study anymore. My husband says that I’ve internalized it all, and I think he’s right.

For many years, I thought I’d never again have to struggle against that sense of being compromised, broken, and wrong. Then, I got the Asperger’s diagnosis. After the initial rush of “Yay! That explains everything!” came the second wave of becoming profoundly aware of the language of impairment, disorder, deficit, and disease that permeates most conversations about autism.

That’s when I started to really believe in karma. I don’t mean the idea of karma that says you get punished for something you did in a past life. I mean the idea of karma that says that each person comes into this life to struggle with and learn about a core issue, and that we keep getting the same lessons over and over in order to strengthen our understanding. For me, as for a lot of people, the question I’ve had to grapple with all my life is “How do I maintain my power when everything around me keeps telling me that something is wrong with me?” If you’re autistic and want to live a happy life, I think that this question is key.

In my next post, I’ll talk more about how I’ve grappled with it.

© 2010 by Rachel Cohen-Rottenberg

6 comments

Grieving the Dream and Living What Is

October 9, 2010 Rachel Childhood, Communication, Diagnosis, Grieving, Parenting, Sensory Processing Issues, Spectrum Pride, Speech

When I first began delving into the words written by parents of autistic children, I found myself troubled by phrases like “the heartbreak of an autism diagnosis.” At the time, I was just beginning to develop a positive identity as an autistic person, and I felt offended that people would feel heartbroken at having a child like me. At the same time, I recognized that the grief was sincere, and that I couldn’t possibly tell someone that his or her feelings were wrong. I’ve been known to argue with an outlook or an idea, but not with a feeling. Feelings, in my view, are not open to disagreement.

I’ve come to understand the grieving, I think. I’ve come to understand it because, having received a diagnosis at 50, I’ve gone through my own grieving process. And what I’ve come to learn is that my grief is not about being autistic. I don’t feel that it’s unfair to have been born autistic. I don’t feel as though some terrible tragedy has descended upon me in mid-life. I don’t curse my fate and wish I were just like everyone else. I’ve never asked who I might have been were it not for my parents’ abuse, and I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that.

And yet, I grieve. I grieve the loss of the person I thought I was—the person who could navigate the world like everyone else, the person who could do anything she wanted if she worked hard enough. I grieve the things that I’ve always wanted to do but am physically unable to do. I grieve the loss of my apparently privileged status as an apparently neurotypical person. In short: I’m grieving what was never there to begin with. I’m grieving an idea of myself and of my place in the world. I am not grieving what is or what was. I am grieving what doesn’t exist and what has never existed, except in my own thoughts.

This understanding came into focus in the days after I met with a woman at a local civil rights organization. She works in the area of disability rights, and I approached her in my role as the leader of the Vermont chapter of the Autistic Self Advocacy Network (ASAN). When we set up the meeting, I told her about my auditory processing condition and about the kinds of accommodations I need—namely, a quiet space and a slow conversational pace. She was quite welcoming and offered to meet anywhere I wanted so that the environment would work. We ended up meeting in her office, which is just five minutes from my house.

In some ways, the two-hour meeting went very well. She was very friendly and very dynamic. I learned that she works as an advocate for parents, attending IEP meetings and helping to protect the rights of children. I learned that she does a great deal of anti-bullying and anti-harassment work, running compliance trainings for schools throughout Vermont. I learned that, as a person of color, she had been through severe racial harassment as a student, and that much of her work is powered by the conviction that no child should ever go through bullying at school.

The downside? She spoke very, very fast and provided a great deal of verbal information. I was able to see, right away, that asking her to slow down would not have worked. I don’t think she would have been able to do it. Her work is very stressful, and she was clearly up to the task, but what made her so good at her work also overwhelmed my auditory processing system. As the meeting progressed, I felt more and more overstimulated, and less and less able to find the words I so badly wanted to say. And because I’ve never seen a nonverbal signal in my life, words were all I had. Without nonverbal shortcuts, the process of listening and speaking became exhausting. I probably should have cut the meeting short, but I wanted so much to make connections with other people working on disability rights that I stayed glued to my chair. Needless to say, I needed a few days after the meeting to get my nervous system back into a state of calm and balance.

Helping advocate for the rights of parents and children, especially bullied, harassed, or otherwise vulnerable parents and children, is something I’ve wanted to do all my life. I have a fire inside me when it comes to injustice, and much of the recovery work I’ve done for 25 years has been aimed at being able to go out there into the world and fight the good fight. I want to go to IEP meetings and be a supportive advocate; I want to be able to walk into any situation and do workshops and trainings. When it comes to making right the wrongs of the world, I’ve got the spirit of a warrior. And yet, no matter how patient, how brave, and how intelligent I am, I can’t make my auditory processing system do what it isn’t made to do. I can’t change, by an act of will, the way I process speech and sound. I can’t see a nonverbal cue, and no amount of explaining is ever going to get me to.

As I’ve looked at what happened at the meeting, the truth has become clear: I am an experienced and conscientious researcher, writer, and editor. I am highly intelligent. I am very sensitive. I am absolutely tenacious. But there is something I cannot do: I cannot implement my work in a chaotic or dysfunctional environment. In the quiet of my own home, I can put together a fact sheet about children’s rights. I can interview people and develop materials on bullying and its impact. I can help to create an anti-harassment workshop. I can gather large amounts of information and organize it in a myriad of ways. I can do the behind-the-scenes work, but I cannot go into the thick of things and be effective.

It’s not that I’m incapable. It’s that I cannot find an environment in which it would work. An IEP meeting is not such an environment. A compliance training is not such an environment. Any situation in which people are under stress, not at their best, and talking at cross-purposes is not such an environment. In those environments, almost by definition, accommodation for my disabilities becomes impossible. After all, if the situation were friendly, functional, and fair, there would be no need for me to be there in the first place.

This realization represents the end of a decades-long dream, and there’s sadness there. I imagine that it’s an emotion similar to what a parent feels upon receiving an autism diagnosis for his or her child; it’s the end of a dream, and there’s sadness there, too. I remember how many years I planned for the birth of my daughter, how many years I dreamed of all the fun we would have, how many times I told myself that I couldn’t determine the future and yet found myself looking forward to a multitude of things. Being autistic, I might have had an easier time with an atypical child than most, because I’ve always been the one who is different. But a typical parent has typical dreams, and there is grief in letting go.

In large part, those dreams have to do with life being safe and welcoming to a child and, as we all know, the world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

The grief I feel is for what never was and for what has yet to be. It’s not for who I am. And I imagine that, for parents, the grief is for the dreamt-for child and the dreamt-for plans; it’s for the opportunities and the safety and the welcoming that the world does not yet make possible. And it’s absolutely right to grieve that child and those plans and the state of the world as we know it. But grieving all those things is different from grieving that we are autistic. I want to say to parents, “The child who is here does not need to be grieved, any more than I need to be grieved. There will be new dreams, different dreams, dreams that are based on what is real—not on the doomsday prophecies of doctors with God complexes, not on research that barely scratches the surface, but on the child you see in front of you, whose life you are committed to nurturing. That’s the only basis for a dream—your flesh-and-blood child, longing for a way to manifest his or her reason for being in the world.”

Each of us is here for a unique purpose that no other person can ever serve. There is so much to be done. So let us grieve our dreams. Let us carry our grief with dignity. And let us get to work.

© 2010 by Rachel Cohen-Rottenberg

26 comments

Guest Post at Static Vox on Raising Autistic Children

September 9, 2010 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Empathy, Parenting, Spectrum Pride, Theory of Mind (ToM)

I’m guest posting today over at Static Vox. My friend Stat Mama asked me to write a piece about raising autistic children, and I was happy to do so. Hope you enjoy my article!

© 2010 by Rachel Cohen-Rottenberg

2 comments

My Father and Selective Deafness

June 29, 2010 Rachel Childhood, Communication, Hearing, Sensory Processing Issues

I’ve had an epiphany lately regarding my father and some of his formerly most mysterious and annoying habits.

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

12 comments

Autism, Insomnia, and Pharmaceuticals

May 16, 2010 Rachel Childhood, Depression, Happiness, Medications, Sleep

Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.

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

9 comments

Some Thoughts on Autism and Bullying

January 11, 2010 Rachel Aging, Bullying, Childhood, Communication, Spectrum Pride

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

9 comments
« Older Entries