Journeys with Autism

Last week, Erin asked some great questions about raising an Aspie daughter. My situation is a bit different, in that I’m an Aspie mother raising a neuro-typical daughter, but my experience might be of some help.

Erin began by saying:

“I’m trying hard to understand how my daughter thinks. I don’t ever want her to get the idea that she’s broken, or needs to be fixed, or needs to conform or submit to someone’s ideal of normal, etc. I want her to believe in herself while learning to navigate the NT world, if that makes sense. But the social stuff is hard for her (already, she’s 5 and it’s only going to get worse).”

Here are Erin’s questions, along with my answers:

1. How did you navigate friendships when you were young?

When I was in grammar school, I didn’t have too many problems with friendships. One reason was that I tended to favor boys over girls. I felt that I had more in common with boys. They were more likely to be athletes like me, and they were more straightforward than girls. Plus, they didn’t spend recess talking about their hair or their clothes, two subjects that did not interest me in the least. In fact, they didn’t spend time at recess talking at all, so I was relieved of the obligation of standing around and trying to figure out how a conversation works. Instead, we played whatever sport someone had in mind at the moment. It didn’t matter what we played, so long as we were running around and screaming our heads off.

I also made an effort to befriend girls who were outsiders. My parents told me that I should seek out the girls who were excluded. My mother and father were not religious people, but they had pride in being Jewish and felt that this was the Jewish way. They said that because we Jews have faced isolation and exclusion, it’s incumbent upon us to reach out to people in similar situations. So I did, and gained both good friends and a sense of moral power.

Another aspect of grammar school that made life easier was that I went to a small, conservative, well-run public school. There were lots of rules there, and the rules were enforced very fairly and consistently. The principal did not allow any kind of physical fighting to go on in his school. If two boys were caught fighting on the playground, he would call an all-school assembly (grades K-8) and read us the riot act. Everyone feared him, but he made school a very, very safe place. I did not feel uncomfortable there, because the prime directive was that kids be safe with one another, and that helped me to feel good about myself.

But then, there was high school. High school changed everything. I had a very, very difficult time. I went from a small grammar school to a very large, chaotic high school. The social relationships became more complex, and I couldn’t navigate them very well at all.  I gave up sports (young ladies did not play baseball in those days), and I felt like a ghost most of the time. I spent a lot of time faking it, pretending that I knew what was going on when I had no clue. Each year, I would choose a girl I wanted to emulate and spend the whole year trying to act like her and be like her.

Apparently, this is quite common for Aspie girls. It took me many years of work in adulthood to assert my personality and to take up my share of the space on this planet.

2. How about family relationships?

My family was quite dysfunctional and very overwhelming to the senses. I gravitated to the calmest people in the family–my maternal grandparents and one of my uncles. They were always very kind and very loving. I can feel myself relaxing just thinking about them.

3. With all the ways you were different from other people, how did you find empowerment and confidence?

Being an athlete helped tremendously when I was a kid. I felt very powerful being able to pitch, to hit a baseball out of the infield, and to run and slide and do all the things that girls weren’t supposed to be able to do.

When I was in high school, I traded in athletics for music. I participated in every musical activity the school had to offer—marching band, orchestra, jazz band, concert choir, and the vocal ensemble. I was the piano accompanist for the ensemble and for a Gilbert and Sullivan musical. I learned how to play the alto sax so that I could be in the jazz band, and I loved to sing and to play the guitar.

It’s a tragedy that so many schools have cut their music and arts programs. Without an excellent music program in high school, I might easily have used drugs to deal with my feelings of isolation. I was very, very fortunate to live in the time and place I did.

But the most important thing I’ve ever done for a sense of personal empowerment was to train in a martial art. When my daughter was seven, I got her involved in a dojo for women and girls, and I joined the dojo when she was about 11. My daughter left at 14 with her purple belt, and I left with my blue belt. (I’d still love to train, but the dojo is too far from where we live now.) Using the empowerment, focus, and agility she learned in karate, my daughter is now a goalie for her school’s soccer team. (And this was a child who actively ran away from the ball her first year.)

I love the dojo because its philosophy is to teach girls and women how to trust their bodies, use their voices, walk with confidence, and defend themselves. There were a number of developmentally disabled girls and women there, and they did just fine. There is no girl or woman who cannot learn a martial art. I have seen it with my own eyes. I have watched girls grow in confidence in beautiful and powerful ways.

At the dojo, they do a lot of work on verbal self-defense, since that is what girls most need on a daily basis. They do a lot of role playing in which a girl is told she is too fat, or too thin, or stupid, or weird, and then everyone has to come up with a way to shield and to respond. It’s a very supportive environment and very affirming of differences.

4. Is that too many questions?

No, not at all. Any and all questions are welcome.

© 2009 by Rachel Cohen-Rottenberg

Since being diagnosed, I’ve been looking at childhood photos of myself in a new light. Not only do I see a kid on sensory overload trying very hard to be normal, but I also see some interesting Aspie things I do with my eyes and with my arms. So here are some photos of me from infancy to my senior year in high school (1958 to 1976).
 
Studio portrait taken sometime between June and December, 1958

I’ve already got that focused Aspie stare and a look of alarm mixed with fascination. It’s as though I’m thinking,  “Wow, I had no idea there would be THAT many visuals. This is kind of scary and very cool at the same time.”

  

  

 

Outdoor photo, circa 1960

Okay, I put it here because it’s cute.  

 
 
 
 

Fifth-grade school photo, 1969

It’s subtle, but my eyes are definitely averted in this photo. I couldn’t quite make eye contact with the photographer and his camera.

  

  

  

  

  

  

Newpaper photo, summer, 1969
My father took this photograph after I won a statewide piano contest.
Playing in recitals and contests completely overloaded my senses, and I felt very empty inside.  I recall vividly going through the motions of having the picture taken and trying to pretend that everything was fine.

 
 
 
 

  

  

  

 

 

Photo in the music room at my high school, spring, 1976

I love this photo, because it shows me concentrating at the piano. By this point, I had switched piano teachers and was freed from the trials and tribulations of recitals and contests. My new teacher was an elderly French lady who taught me proper technique and helped me break down a piece of music in order to understand all the different parts.

Recently, my oldest friend in the world sent me an email to tell me that she had had a very vivid sense memory of sitting in the sun in the music room, listening to me play the piano. Since I received her email, this photo has become especially precious to me.

  

  

  

  

  
 
 
 
 
 
 

Photo taken outside my high school, just before graduation, 1976

I remember feeling very relieved because high school would soon, mercifully, be over. It was a beautiful, breezy spring day. As I look at it now, I can see that I didn’t quite know what to do with my arms (another Aspie trait).

My hippie-chick photo, 1976

I saved this one for last because it is one of my favorite photos of myself. I am looking directly into the camera, and on my face is the fierceness and the focus that I felt inside.

Note that I’m wearing my regulation hippie-chick attire: beaded necklace, embroidered peasant blouse, and blue jeans. I’ve also got the long hippie-chick hair, parted in the middle.

 

I love looking at old photos with new eyes.

© 2008 by Rachel Cohen-Rottenberg

When I first realized that I was an Aspie, I began to look at my past with new eyes. As so many of us have found, numerous aspects of our lives make sense for the first time when viewed through the lens of Asperger’s Syndrome.

One of my first memories is that of watching another child, with some kind of helmet on his head, riding a tricycle. I was between three and four years old, and I thought he looked like an astronaut who had been to outer space. I don’t recall talking to him or asking to ride the bicycle. I don’t recall feeling that I could traverse the vast and invisible chasm that separated us. I was fascinated by the helmet, though, and that he kept riding around in circles. I enjoyed observing him very much. It felt safe to be in my little bubble, way on the outside, looking in.

I remember the linoleum on my bedroom floor, riding my tricycle around the room, wearing a pair of blue corduroy pants, and my grandfather picking me up, but I can’t remember any faces. The ones I see in photographs from that time don’t look familiar to me at all. I can remember the gray and yellow floor tiles in the kitchen in vivid detail, but I can’t remember any conversations with a single soul. If I had them, they made no impression on me.

I also recall being five years old and going to kindergarten. I can remember the crayons, and the play dough, and the color wheel, but I don’t recall playing with any of the children. In fact, in my mind, I don’t see other children there at all, except as passing shadows. It was as though I were there alone, caught up in my fascinating new discovery of primary colors and how to combine them.

At some point between five and seven years of age, I began to wonder about the images in other people’s minds. One afternoon, my mother was in my room, talking to me, and I found myself occupied with the fascinating question of how she saw things in her mind’s eye. I realized that in her mind, she had memories of her old neighborhood, of her school, and of her parents, teachers, and friends. I knew that everything she had ever seen and experienced, and everyone she had ever known, uniquely shaped the way she thought, felt, and experienced the world. Because I had not lived her life, I knew that I could not imagine what was in her mind. Seeing her mind in acutely visual, literal terms, I realized that I could not see it at all.

Though decades would pass before I heard the word, I realized that I was mind-blind. My mother seemed an impenetrable mystery. At that moment, it did not occur to me to trust in the idea of commonalities that transcend the unique pictures in our minds. As I grew older, of course, I understood that there are levels of consciousness and feeling that human beings have in common. But for me, that understanding did not come intuitively. Rather, it derived from a great deal of thought and an even greater leap of faith.

By the time I was six or seven years old, I realized that I was very different from other people. I didn’t have the words for it at that time, but I knew about my “otherness” and wondered about it, as so many of us did, and as so many of us still do.

© 2008 by Rachel Cohen-Rottenberg