Asperger's and Girls (14 page)

A young girl with AS is likely be bombarded with sexual information that she doesn’t quite know how to parse, and may well overhear lots of stuff as other kids talk at school, when the teacher isn’t around.

Most importantly, girls with AS are likely to pick up less coherent information about sex than other children. Their comparative ignorance will not only provide extra fodder for bullying and teasing, but it can also make them a target for sexual harassment from other kids or even adults.

The comparative ignorance situation only gets worse with time. A lot of girls, especially AS girls, start puberty earlier than you’d expect. I reached my full growth, height and all, before I turned thirteen.

If a girl with AS isn’t even aware of the possibility of puberty, the results can be extra painful. Remember
Carrie
? Don’t think for one instant that kids aren’t capable of extreme cruelty in real life.

I understand that many people feel it is appropriate, even necessary, for parents to protect their children’s “innocence” by strictly limiting information about sex. The problem with that is that ignorance and innocence are not at all the same thing.

A lot of those people think it’s good to teach even very young children about the difference between appropriate use of medications and illicit drug use, because they want to protect those children from harm. Those same folks are often afraid that information about sex will turn their daughters into wild girls.

The truth is, plenty of accurate information is not dangerous. Ignorance is.

When I was twelve, I obtained access to a copy of
The Joy of Sex
. I immediately read it several times through. While it is not the kind of book most people would recommend for a young teen, it was actually pretty good. It was factual, it was straightforward, and it was even oriented towards committed couples. Reading it thoroughly definitely didn’t turn me into a teen sex maniac. It wasn’t until many years later that I so much as kissed a guy. Knowledge about sex just does not equal going out and doing it.

Mind you, if I’d had access to good books on sex that were aimed at my age and developmental level, I wouldn’t have been hunting all over for decent information. It also would have saved me a lot of time and bother reading those darn Judy Bloom books; I hate chick lit, but Bloom put clear and simple information about puberty into some of her work, so I slogged through those soggy, girly books repeatedly. I wanted the information.

Alas, my parents had only offered us only one book:
The Wonderful Story of How You Were Born
. Blech. When I was as young as six, I was frustrated by the fact that the book was deliberately, mind-bogglingly vague. Since my parents had picked this book out and brought it out in answer to any questions on the subject, I inferred that they simply weren’t going to tell me anything.

Of course my parents wanted to be helpful and informative, and they wanted me to come to them first with my questions. They had no idea how clearly they communicated the opposite of what they wanted to say.

That’s right; even a girl with AS who has little social awareness can pick up on those none-too-subtle signals from parents that while they want their children to feel free to ask them anything, they really aren’t clear on what to say and don’t really want to give actual information.

When a girl has to hunt for information herself, that’s a problem for obvious reasons. Less obvious is the fact that when a girl doesn’t have the curiosity that would lead to such hunting, that is just as big a problem. Not knowing what is going on can get you into bad situations.

If a girl is nine or older (yes, nine!), she should have two or three books addressing the topics of sex and puberty that are at her reading level. This means both the curious and not-curious girl will have basic, clear information in a non-social context. (Talking with your parents is a social interaction. Social interactions are problematic for people with AS. ‘Nuff said.)

When I say books, I mean books that say the things you are embarrassed to say directly. They should even have drawings of the dreaded dangly bits. I would strongly suggest, at a minimum,
Where Did I Come From?
by Peter Mayle,
What’s Happening to Me?
also by Mayle, and
The Care and Keeping of You: The Body Book for Girls
from the American Girl Library. That’s an absolute dead minimum, but it’s a start.

The reason for using books is simple: even those of us with AS who are linguistically fluent can have great difficulty framing questions and having actual conversations about difficult topics. The “sex talk” as usually given is about as helpful to us as road signs written in cuneiform (except, of course, for those Aspies who have a special interest in cuneiform).

I remember when my dad decided it was time to have a “man to man” talk with my younger brother, who has autism. Dad started out by saying, “Well, soon you’ll become a man.” Jimmy replied, “I don’t want to be a man. I want to stay a little boy forever.” Then he wouldn’t listen to a single thing my dad had to say!

The fact is that most people address this topic in a non-literal and very confusing way. This means that girls with AS are likely to be confused and not know what to ask. Worse, they may be confused and misunderstand things badly, but not know it!

Books (with pictures!) are much more useful. They don’t try to make eye contact, they don’t fuss about our stimming or mannerisms, and they aren’t likely to be embarrassed. They are the same every time you go to them. They are ideal teachers for this topic.

When a girl with AS has never read simple, accurate information about what the heck sex is, she’s very vulnerable. Her own body can easily become a confusing mystery, to start with. Then there is always a fellow out there who will act as if he’d just invented some activity as a substitute for “real” sex. It doesn’t really count, he’ll say, and he’ll also tell her it’s totally safe and would prove she really does care about him after all. She really, really, REALLY needs to know that, yes, oral sex has been around for awhile, that, yes, there are guys who will try to talk her into it with little regard for her feelings, and yes, people do get STDs from it.

All girls with AS need to be told, frequently, that their bodies are under their own jurisdiction, and no one else’s. All those years of everyone putting “compliance” as a goal on their IEPs can backfire badly if they aren’t told they have the absolute, irrevocable right to say no! They also should be told that if a guy is pushy, there is no need to be polite. Saying, “Scram!” is just fine.

But, you say, my daughter is very innocent and sheltered and only socializes with the church youth group.
Get her the darn books
!

When parents give an Aspie girl incomplete and therefore only half-right information, deliberately leaving things out they find embarrassing or inappropriate, they run a serious risk. We with AS are very sensitive about honesty. As soon as we find out that someone gave us information that was only part of the truth, we lose our trust in that person.

At the same time, it doesn’t matter how sheltered a girl with AS is, or how many times you work on pounding the idea of abstinence into her head. First of all, she is going to go through puberty and has to deal with hormones no matter what. You can’t stop that.

Secondly, if a girl with AS socializes with any teenage males of any sort, there is a good chance that the predators of the group will spot her right away.

Just as those of us with ASDs seem to have an invisible target on us that every con artist in the world can see, girls with AS are targets for guys who want a vulnerable girl whom they can manipulate easily.

Simply having a popular guy pay attention to her is a big deal for a girl with AS. The pressure to be socially accepted is tremendous for many girls with AS. In short, we’re sitting ducks.

No group of teens, no matter how clean cut, is wolf-proof. There are both guys and girls out there with the social savvy to seem like ideal teens to the adults while being quite different just outside of the adults’ range of vision. See myspace.com for details.

How I Did It

After telling you about all of these concerns, caveats, and pitfalls, I should mention that it is possible to get through it all and have a happy, healthy life, with or without a partner. I did, and others can, too.

I was fortunate enough to have parents who did not feel I had to be normal to be successful, to find decent information on puberty and sex early on, and to have been taught how to use mistakes and bad experiences as learning tools. I was unfortunate enough to absorb a lot of misinformation and to try far too hard to fulfill what I perceived as the right way to find a fellow. I dearly wish I had been told that most of what our society tells us about relationships just wouldn’t fit me.

When I was a young woman, much of what I knew about dating and marriage came from reading as much about the topics as possible and listening to other females discuss those topics.

You see, it’s very important to me to find out the correct rules for doing things and then to do those things correctly. Thus, I spent a lot of time figuring out what I “should” look for in a guy according to people who seemed to be experts.

I tried very hard to learn and follow the rules for dating and finding a husband. I married someone who fit everyone’s idea of the perfect guy for me when I was not quite twenty-one. We split up just five years later, but those five years each felt like a century. We were deeply, fundamentally unsuited for each other.

Fortunately, that experience was enough to snap me about of my belief that listening to other people was a good way to find the correct rules. When I stopped listening to the external pressures to do dating a certain way, things got a lot better.

I got together with a guy who had been a platonic friend for a long time. We met in a science-fiction and fantasy book discussion group (not the kind of place you’re supposed to find Mr. Right). He is, as I said, older than I am by thirteen (and a half) years. He was forty and had dated three, count them, THREE women in his entire life, none before he was twenty-six years old. He lived quietly with his books in an apartment done entirely in shades of brown. His spare time was spent adding to his collection of first editions of great twentieth-century fantasists, a collection started when he was twelve, or else writing Lovecraftian pastiches.

He was too old, too anti-social, and it was too soon after I’d left my husband. It was all wrong by so many of the rules I’d been taught, but he was a real friend and let things go at my pace, not his. He never pushed, never was aggressive, and treated me like I was the greatest human being ever.

Now we’ve been married for thirteen-plus years. During my first marriage, I dropped out of college. During this one, my husband gave me all the support I needed to go back and get my degree in computer science. When I started talking and writing about autism, my husband backed me to the hilt, and has ever since. His apartment is no longer all brown and sedate; I’m afraid I’ve added a lot of chaos and color to his life.

What I needed was NOT to date by the usual rules. I needed to date according to the kind of person who I would actually want to spend a lot of time with and who would be happy spending a lot of time with me. Yes, I know that statistically speaking, I’ll likely outlive him by twenty years, which sucks, but it’s worth it.

My goal here has been to convince you that there are “rules” that girls with AS do need to know and be taught, such as the importance of using your head as well as your heart in matters of romance, and the fact that just because everyone in our culture knows that romantic love is the most important thing in the world doesn’t mean it actually is. There are also rules they don’t need to know, and I’ve told you why.

Girls and women with AS can survive and thrive in a society that is obsessed with relationships. The best thing you can do for a girl with AS is to accept that she has AS and work from there.

In Conclusion

As it is with so many areas of life, what girls with AS need to have successful relationships and to cope with the world’s addiction to sex and dating is
knowledge
. They need to be given the knowledge that who they are is okay and they don’t have to conform to others’ ideas about popularity, dating, and finding relationships. They need to develop knowledge of friendship skills through Aspie-friendly social interactions. They need a clear knowledge of puberty and sex so they can take care of their own bodies and make their own decisions about what they will and won’t do.

Parents, teachers, and professionals can all help girls and women with AS develop these kinds of knowledge. Starting early on is best, but for older girls and women with AS, starting right now is just fine.

The sooner the learning process starts, the sooner the knowledge base is developed, the more fulfilling life can be for someone who has the knowledge and skills to make her own decisions about relationships and pursue her own goals.

As for me, I need to go ask my husband to dust his Universal Monsters action figures, and then I’m going to decide where to put the lovely bust of Boris Karloff he gave me. Life is good.

Maternal Instincts

in Asperger’s Syndrome

Meet Ruth Snyder

R
uth Snyder is a Registered Nurse and a single mom of four great kids, two of whom have been diagnosed with autism. She was diagnosed with autism as an adult, though she didn’t understand what it meant for a long time. But she hasn’t let that stop her. She has almost completed her BSN, and plans to study neuroscience or become a Registered Nurse Anesthesiologist in the future.

Ms. Snyder also loves to write, and hopes to have more of her work published. Another goal is to become a positive role model, public speaker and advocate for others on the spectrum. She’s accomplished several of those goals with the publication of this article.

Ruth Snyder’s story is often painful to read, as she describes a childhood of abuse and neglect. The expression of her experiences is as significant as their content; hers is a genuine voice from the world of autism.

She’s survived many betrayals—by uncaring parents who were ashamed of her; lovers who used her and left her; doctors who misdiagnosed her and her children; and unsympathetic teachers—we must marvel at her resiliency. She has never stopped looking for ways to improve her life and the lives of her children. We are so grateful she has shared her story, and believe it will enlighten all who read it.

W
hen I was growing up, I often felt that I was in a magical world that no one else could see, yet I could see people in the world here with me. I never realized that others could not sense things like I did. A more accurate term I could use now is that I never realized that others “perceived” things differently than I did. If I thought something, I believed others could hear those thoughts. I did not begin to learn different until I was much older. I always thought others could hear the sounds I heard, smell things, feel things, just like me. I was not aware that they did not see the wonder, the beauty, the amazing brilliance of light radiating from the trees and plants that I was able to see with ease. I could gaze at the sky for an entire day feeling like I was a part of the sky The smell of the grass underneath me would bring me a sense of peace.

The entire world amazed me, and the entire world was whereever I was. Nothing else existed. Exploring the world was my favorite thing to do. I wandered very far from home as early as I can recall. The first time I wandered was during my first year of school. I decided to follow a classmate to her home by taking her bus instead of walking with my sister to our home. The challenge was to find my way home after going to a new place. By the age of five, though, I had already explored most of our town and found my way home before too long. My mother went to work when I was four and I was left with my elder siblings, who never noticed I was gone. That was how I was able to get out when ever I wanted, even at night. By nighttime my parents were too tired to notice if I left. Sometimes I would just go and sleep outside. Other times I would wander until I got tired. One of my favorite places to go was in the street, under a certain light, in a certain spot that felt just right. I was rather fortunate to have survived the adventures of my life. My experiences were fun and I learned from them. I learned what not to let children do if I ever became a parent.

I have heard people say that the world is getting worse, that crime and violence is up, and it is not safe in any neighborhood any more. Safety is an illusion. I had heard that it is better to work on feeling brave than it is to work on feeling safe. When I was a child I felt brave, not knowing what safe was, and lacking any real knowledge of the emotion fear when walking into what some might call dangerous or reckless situations.

I felt like I was an adult even when I was a child, only now that I am an adult, I am painfully aware of the fact that I felt like I was an adult because I had no positive adult influences in my life. I had no parental guidance. There were things I knew but I did not know how I knew them, and I did not understand why the adults in my life did not know better than to do what they were doing. It was what I considered simple facts of caring and showing that one cared. I would instead care for the stray animals I found and leave the people alone. I was only six when my sister had her baby. That is when I started learning how to take care of children. It seemed to come naturally for me though, and I began helping with children whenever I could find them around. It also gave me a way to get out of my house. By the time I was twelve, I looked like I was twenty-two. Not many people asked my age and I did not tell.

I knew I wanted to become a parent someday, and I thought it would naturally come in the order that was expected for my generation: marriage, then kids. Teen pregnancy and single parenting was starting to appear more often; young girls that became pregnant were still sent somewhere or forced to give up their babies for adoption, but it was changing. I was aware of the shift only because of the strong emotions involving the debate in our own home. My sister became pregnant when I was five years old, I remember offering to “cut” her baby out for her. My mother was very ashamed of my sister and could not tell our grandmother, her mother. I can still feel the negative way my mother felt during that time. All I could see was the wonder of a new baby.

I was going to do it the right way, marriage first, then children. When I found out that I was pregnant, the reality did not register. I was sixteen and pregnant, and the day I found out I called my mom to tell her, but did not go home for a couple of weeks. My home was my legal address. It was where my parents lived and most of my stuff was, but I was rarely there. Could it be called home then? Home was with anyone I could find to stay with and, looking like a woman, it was rather easy to find someplace to stay.

Looking back is the only way I can really process anything that has happened to me. I have learned that if I stop and turn around I may be able to see the steps it took for me to get to the point I am presently at. It does not always work and sometimes, when I am looking back or talking about the past, people say, “Stop living in the past.” I get rather confused with that statement because I am fully aware that I am living in the present— just going back to the past in an attempt to figure things out. More often than not, I can come to a reasonable explanation of how I ended up where I am, and how to avoid doing the same thing again if the outcome was unpleasant. If the outcome was good, I tend to be less able to figure it out. Often people will tell me that what I said was “poetic,” or I’ll receive a positive response to something I was unaware that I said. How to manage this better is the life challenge I have daily.

Looking back on how I got pregnant was a very long process before I found the answers. Why I got pregnant took even longer. Teenage pregnancy had become an “epidemic” according to some reports. The social stigma and shame was still a fact, as it may still be today. I recently saw a news article about a fourteen-year-old girl getting pregnant and having to go to another state to get married to the father. He was over eighteen. The state officials wanted to have him arrested for statutory rape. That is a term that was impossible to comprehend when I was younger, but now I understand it. I understand the legal term but not the emotional aspect for the legal pursuit in this case. Are the officials trying to “protect” the young girl? If they are, then I think they are too late.

I think I can begin to comprehend the legal case based on my history—based on a situation that occurred in my life. When I think of it that way I wonder if I could support the legal pursuit the state officials were attempting.

Before I turned sixteen years old I became sexually active. Had anyone asked me if I were, I probably would have said no, only because I did not comprehend what the term “sexually active” meant. I now can comprehend the term, but not always the degree of “activity” that accurately defines “sexually active.” This topic alone I could discuss for pages, but the point is that I could not have honestly answered yes to that question for a long time. There are also other words adults use to talk about the subject, and I am not exactly sure why they are afraid of talking straight-forwardly about the subject. I now believe that one of my school counselors knew I was sexually active, or at least strongly suspected it. If we could take that same situation now, knowing what we know about autism, the entire situation could have been managed much better. My life as well as many others’ lives could have been affected in a more positive manner.

The situation was this. My counselor and I met on a regular basis because I had special needs or problems that had affected my school life for many years. Over the course of time she noticed a change in me that I was not consciously aware of at the time. I am not even sure I would be aware of it so much now, as that is but one of my challenges. I began to dress differently. I am assuming I went from looking like a “good” girl to looking like a “bad” girl. I may never know what she saw different about me because the discussion was never brought up. Instead of talking to me about why I was changing, or even how she saw the changes or what she suspected, she set up an appointment for me and told me where it was and when to be there. I walked to the appointed place, more than ten miles away, and checked in. The place was called “Planned Parenthood,” and I had my first female exam in my life. It was degrading and disgusting the way they treated me. I had no time to think about it and had no clue what I was walking into. If I had, then maybe I would have been scared, or not gone at all. I was given a paper bag with enough pills to last several months and told to take one every day at the same time. I know now they were birth control pills.

Looking back at that time in my life, there were many open opportunities for me to learn. There were windows of opportunity to discuss the “facts of life” or the “birds and the bees,” but most importantly to discuss with me what they thought I was doing and what I thought I was doing. It was not just my counselor; it was also the institution called “Planned Parenthood.” If they knew about autism in girls would they have been able to talk to me differently?

Then of course there is the parental influence. The counselor and the institution told me that they could not and would not discuss my situation with my parents. Not knowing what situation I was in, I never understood these statements. Years later, while I was pregnant, my mother finally said something like, “I really thought you were smart enough not to get pregnant and I know you were on birth control pills.” I asked how she knew and it turns out that they filled in the blank check that she gave me to pay the clinic as “Planned Parenthood.” Twenty-two years later I found out that my mother got pregnant before she married my dad.

Only now do I see the opportunity we missed. I learned from my history how to discuss the issues of sex with my children, without fear, guilt, or shame. I learned how to be open to the issues and current trends of society in order to help them make their choices; to always continue to grow in my own personal issues on the subject so that I do not push my fears and judgments onto them. I am learning to watch for open windows and doors of opportunities to discuss any topic, especially the most sensitive and important ones. I have learned that I have to be there for them when they need me, not when I can schedule them in.

The summer I got pregnant with my first child is filled with memories that are not easy to explain. Perhaps I do not remember the way most people do, but the memories are still etched in my spirit in a way that will never change. I remember a feeling that I had never had before and felt only one more time after that. I do not seem to recall the dates or times that are based on the machines or units the world uses to measure the quantity of moments; instead I seem to measure based on the quality of those moments. I never wore a watch, and rarely looked at a calendar. Keeping track of what is called a “period” was impossible. The fact that I was taught about menses or that “special time of the month” did not help at all either. I did not know they both referred to the same thing. I actually was not sure what a period was or even the full use of feminine products until after I had the baby, when they taught me in the hospital. I began bleeding heavy when I was eleven and thought I was dying of colon cancer. I had overheard a conversation my dad was having with a relative that had colon cancer, and it was first detected by “bleeding when she went to the bathroom.” After I had the baby and figured it out, I decided I would never avoid real talks about this kind of stuff with my children. My first child was a boy, so I thought I would have it easy.

I was still confused, quite literally, as to how I got pregnant. To this day I still believe in divine intervention, even though I also know the physiological aspects now. During the pregnancy I had a shirt made that stated “Kids get in the darndest places.” It was a sentiment that was rather funny, and people loved that shirt. I did too, because it explained my confusion without anyone seriously knowing that I was confused. The confusion led to reading as much information as I could get from the doctor. This was the time before the internet. The doctor I had was an amazing person and he seemed to give me extra time to make sure I knew what was going on, as best as he could. He advocated for a natural birth and introduced me to his wife, who was a birth instructor. She ended up being my personal labor coach, too.