Archive for October 27, 2010

Using Visual Strategies to Sequence Tasks

October 27, 2010 Rachel Making Lists, Visual/Spatial Skills

When I first began to understand my gifts and challenges, I began to see that I have some trouble sequencing tasks in time. I’d never before thought that I had this difficulty, because I’ve always done a very good job with goal setting, project management, scheduling, and similar tasks. But when I look at it, I realize that I’ve always created a lot of good strategies for getting those tasks done, and that when I let those strategies go, I see why I came up with them in the first place.

I used to work full-time and homeschool (yes, on the same days!), and I kept up with all of my commitments quite well. I never had a problem designing our curriculum or articulating our educational goals. I always got all of the materials to the school district early. We consistently finished our curriculum well in advance of the end of the school year, and I always got my daughter to her lessons on time. At work, I never missed a deadline, I was never late for a meeting, and I was always known as someone who kept all my tasks well planned and well organized. Through all the demands of working, schooling, and mothering, I was never late on a mortgage payment or any other bill.

Take any portion of my life, and it comes out looking much the same. Even when I was working minimum wage, and living in a state of extreme sensory overload, and spending much of my time dazed and confused, I always paid my rent on time, got to my appointments early, and made sure my bills were paid well in advance of their due dates. In my whole life, I’ve only bounced one check, and that happened about thirty years ago.

And yet, when I consider cooking a meal with more than one course, I feel paralyzed. I’m perfectly capable of making a main dish and boiling up some rice or quinoa to go with it, but I’ve never considered trying to make a multi-course meal in which everything has to come out of the oven and off the stove at the same time. Of course, I have no interest in cooking a multi-course meal, because it’s best for my health when I eat simply, but just thinking about it feels like a monumental task. Every time I do, I feel like I’m asking myself to move an object twice my weight up a steep hill. My immediate thought is, “Nah. Never mind that.” And then I think about something more pleasant.

For a while now, I’ve been wondering why I’ve always been able to sequence important tasks in time—like bill paying, and tax deadlines, and arriving at work in the morning—but I’m unable to sequence the tasks for something less important, like a multi-course meal. And then, finally, it came to me: I can sequence tasks in time when I make them visual. Then, they’re no longer just tasks in time. They’re actually objects in space, and I can organize objects in space like nobody’s business.

I have three main ways that I turn the things of time into the things of space:

1. Lists. Lists, lists, lists. Not too many lists, because that gets overwhelming, but enough lists so that I can keep my tasks separate and manageable. So, for example, at the moment, I have the following lists that I keep updated:

  • The tasks I need to complete as the ASAN-VT chapter leader.
  • The letters of recommendation and transcripts I need for the master’s program I’m applying to. (Yes! I’m applying to a master’s program! Don’t ask me too much about it yet. I’ll say more when I’ve actually gotten the decision letter.)
  • The books I’ve sold.
  • My sensory diet.
  • Basic daily tasks. (Most of these tasks I do out of habit, instinct, muscle memory, what-have-you, but I keep a list just in case my routine gets thrown off, and I need to reassure myself that I haven’t forgotten anything.)
  • The tasks I need to complete over the course of a week (household chores, bills, lessons, and so on). Most of these tasks are intuitive at this point, but I keep a list so that I have an anchor if something gets thrown off.
  • Bills to be paid.
  • Bank, credit card, and other accounts.
  • Food we need to buy at the grocery store.
  • The things I need to pack when I go to New York City.
  • The art projects I want to do.
  • Miscellaneous tasks that come to mind when I’m doing something else. I keep a “scribble list” for these kinds of tasks.

2. My appointment book.

Oh, sacred appointment book! Where would I be without you?

Excuse me for talking to my appointment book as though it were a god. I know that I shouldn’t be quite so in awe of it, but I am. I’m in awe of the fact that I can hold an entire year’s worth of time in my hands, and open up to the middle of it, whenever I want, without becoming disoriented. In my appointment book, I write down, well, appointments, but also soccer games, school events, tax payments, special errands, and any chores that don’t happen on a daily or weekly basis.

3. Leaving things where I can see them. My mantra is If my eyes can see it, I will remember it.

When a bill comes in the mail, I put it right at my place at the kitchen table, where I can’t miss it, and then I pay it within a day. If I have to hold a bill for more than a day, I put it in a basket that I use for the purpose, and then I write down in my appointment book exactly when I’m going to pay the bill.

If I have a book, or an item of clothing, or a DVD that I want to give to someone, I put it out where I can see it, and I write a reminder in my appointment book to give it to the person.

In order to remember to take my herbs and vitamins, I put them in a small pouch and leave it on my chair at the dinner table. That way, in order to sit down to eat, I have to pick up the pouch, and then I remember to take what’s in it. I do the same sort of thing with my nighttime herbs and medicine: I put them on a shelf where I’m sure to see them.

So how did I figure out all of this stuff? Well, I’m very fortunate in that I love to organize things, large and small. Organizing soothes me and gives me a sense of accomplishment, two things that I’ve needed from the time I was small.

And then, of course, I grew up before there was a diagnosis, and like many of us, found myself out on the open sea without a compass. So, I invented the best compass I could, and I wrote myself a guidebook, and I came up with a host of very good ideas about how to navigate. Many of us did. We’re the ones my fellow blogger Lili Marlene calls “The Last of the Wild Autistics.” It’s a title I wear with pride.

And finally, growing up in a virtual madhouse violent and dysfunctional family meant that I could either chart my own course or go down with the ship. Early on, I looked at my parents and thought, “These people are chaos. I’d better get myself organized.” And I did. Such are the blessings that one brings out of disaster.

So about that multi-course meal? Yeah, I could make one, but only if I sat back for awhile and wrote everything down, and figured out when I needed to start making each course, and what time I needed to put each course in the oven/on the boil/in the saucepan, and what time I needed to take each course out of the oven/off the stove/out of the saucepan, and which area of preparation I needed to interrupt in order to begin (or resume) another area of preparation, and so on, and so on, and so on, until everything was written down in five-minute intervals, and I had mapped out each and every step in detail.

But when it comes to actually doing it? Nah. Never mind that.

© 2010 by Rachel Cohen-Rottenberg

8 comments

My Beadwork

October 26, 2010 Rachel Making Art

This summer, I learned to bead on a loom, and I ended up making four bracelets and four anklets. While I was at it, I also made a bunch of earrings. Here they are, all nicely displayed:



Not bad for a beginner, eh? Now that it’s officially cold here in the northeast (notwithstanding our 60-degree weather today), I’m starting to work on making knitted mittens, booties, hats, and scarves. Together with the beadwork, I’m hoping to get together enough homemade treasures to sell at one of the local craft fairs next year.

Just thought you’d like to see some of the things I’ve been up to when I’m not blogging. :-)

© 2010 by Rachel Cohen-Rottenberg

10 comments

Speak Up on November 1st!

October 22, 2010 Rachel Communication, Community, Marginalization, Self-Advocacy

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown. This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism. To join, you make a donation to receive a CHAPP (charity app). The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities. (Wow! Celebrities!) The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic. According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there. Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism? It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age. Looking at the website, I can’t find any specific information about what those early intervention strategies might be. If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization. And guess what? Not a single one of them is autistic. Not one. Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it. Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question: If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence? Is it that some autistic people aren’t verbal? If so, our nonverbal fellow autists are certainly communicating in other ways: through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior. When they’re communicating with one another, they use nonverbal signals all the time. It makes up 90% of their communication. It’s what we autists supposedly lack the ability to do. But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy? That people can’t speak? Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable. Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.” We’re not impeded from connecting socially online. And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway. At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent. Far from it. We communicate all the time, just like anyone else. But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent. Corina Becker at No Stereotypes Here has a counterproposal: Make November 1st Autistics Speaking Day. She writes:

[O]n November 1st, Autistic people should speak up and be heard…[I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences…I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions”…And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown. Flood the social networking sites with our voices. Provide lots and lots of links to blogs by autistic people. If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices. Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution: Listen to us.

© 2010 by Rachel Cohen-Rottenberg

46 comments

“I’m Ignoring You Because I’m Just So Terribly Busy!”

October 18, 2010 Rachel Communication, Community, Parenting

Are you sick of the “I’ve just been so terribly busy!” excuse for rudeness? Do you have the uncomfortable feeling that it’s just another form of rudeness? You’re not alone.

Yesterday, I felt like I was up to my eyeballs in this kind of discourtesy. Two situations came together at just the same moment. Both scenarios involved, I kid you not, offers that I made to help others in the community. For free. Yes. For free. Just because it seemed like a good thing to do.

In the first case, I’ve been asking to help out at a place in town since February. Every couple of months, I send the guy in charge an email, reminding him that I’m available to help–for free–and I inevitably get a response along the lines of “I’m just so terribly overextended, and I’ll get back to you soon” and then, I hear nothing. Two months later, I write another email, asking why I’m being ignored and restating my interest in helping out with my highly paid professional skills–for free–and I get much the same response. Sometimes, he throws in, “You know, I’m ignoring a lot of other people too, so don’t take it personally.” It makes me feels so much better to know that other people are being treated equally rudely, don’t you know? And did I mention that I’m trying to help the guy from being overextended by offering my skills? For free? Yes, I am.

The second case involves an individual I was going to do some work for—again, for free. I’ve emailed three times, offering my help. The first time, the other person said, “Email me again in three weeks.” I did. Twice. When I finally said, “You know, if you’ve changed your mind, you can just tell me,” I got back an explanation of how the person was just so terribly busy, and my email just got left on the back burner, because their kid is applying to college, and everything is so hectic, and so on, and so forth, and could I come over on Thursdays? Wha-hah? Did I mention that I spent last weekend providing support and comfort to my own daughter as she worked on her college application essays? And that I still managed to find the time to actually be courteous to people who asked me things? And that even when I was working full-time and homeschooling, I kept track of who needed a response and made sure that no one got left behind? I did.

And do you know why I did? It’s simple: because I was raised that way.

My parents taught me that if someone offers to help with something, or wants to get together, or asks you a sincere question, you get back to the person in a timely manner. My grandfather’s immigrant parents raised twelve kids in a tenement, so they were a little busy and stressed out, you know? And yet, they weren’t too busy and too stressed out to instill this teaching in their children. My grandfather passed this teaching to my mother, who was in agreement on the whole concept with my father, and they passed it on to me. As you know, my parents were about four or five cans short of a six-pack, and yet, even they understood the concept of consideration for the time and the feelings of others.

When I was a kid, I learned all the social rules. I observed them, I listened to people talk about them, and I followed them. And then, at some point, when I was focusing on something even more fascinating, all the rules changed and no one sent me the memo. These days, as far as I can tell, the rule is that you can disregard the value of someone’s skills, time, feelings, and goodness of heart just because you’re busy. It’s the all-purpose explanation. Surely, you understand?

This weekend, I really thought I must be nuts. I felt like the only person left on the planet who even uses words like “rudeness” and “courtesy” in a complete sentence anymore, and the only human who considers them to be something more than the ancient relics of a bygone civilization. I started wondering who was upside down—me, or the world?

So I said to my husband, “Am I nuts?”

And my husband said, “No, honey. You’re not nuts. The world has gone crazy.”

I told the story to a friend on the spectrum this afternoon, and she had the same response. She just couldn’t understand the idea of leaving someone hanging for months on end without an update or an explanation. Neither can I.

I’m old-fashioned, I know. And I suppose that there are people out there who will pathologize my desire for courtesy as a symptom of being neurotically attached to rules and consistency. Well, guess what? That’s how civilization goes on, people. Rules and consistency. Otherwise, you have chaos. You have callousness. You have gross insensitivity to the feelings of others. You have bullying. You have the survival of the fittest.

You have the world we live in.

© 2010 by Rachel Cohen-Rottenberg

34 comments

Please Pardon My Overeager Spam Filter

October 13, 2010 Rachel Administrative

Some of you might have noticed that when you attempt to post a comment, it seems to disappear into thin air.

Never fear. It’s just gotten stuck in my spam filter. I absolutely cannot figure out why. I’ve even simplified the filtering criteria, and I still get valid comments ending up in there from time to time.

Rest assured that I always wade through the muck in my spam filter before emptying it, and that I will find any valid comments that get temporarily lost in there. So if you have something sincere to say, please continue saying it.

And if you’re trying to sell porn, or iPods, or cut-rate vacations, or any other product with the intent of separating my readers from their money, your message will never see the light of day. So please, go away, and try to do something useful with your life. Thank you.

© 2010 by Rachel Cohen-Rottenberg

7 comments

Support for Parents From the Man Himself

October 11, 2010 Rachel Doctors, Parenting

In his April 7, 1981 New York Times obituary, Dr. Leo Kanner was quoted on his views regarding the psychological profession and the difficulties it poses for parents. The following is an excerpt from the obituary. (You can find the full text here.)

”There is no raid shelter from the verbal bombs that rain on contemporary parents,” Dr. Kanner, who was known in psychiatric circles as the father of child psychology, wrote in a book in 1941.

”At every turn they run up against weird words and phrases which are apt to confuse and scare them no end: Oedipus complex, inferiority complex, maternal rejection, sibling rivalry, conditioned reflex, schizoid personality, repression, regression, blah-blah, blah-blah and more blah-blah.”

The book was ”In Defense of Mothers.” He subtitled it ”How to Bring Up Children in Spite of the More Zealous Psychologists.” In the book he urged mothers ”to regain that common sense which is yours, which has been yours before you allowed yourselves to be intimidated by would-be omniscient totalitarians.”

“Would-be omniscient totalitarians.” I didn’t say it. Dr. Kanner did. So, the next time an expert tells you that he or she can foretell your autistic child’s entire future, or tries to sell you a treatment, or an outlook, or a judgment that seems altogether wrong to you, feel free to quote Dr. Kanner. Especially the part about the “blah-blah, blah-blah and more blah-blah.”

And then go home and enjoy your kid.

© 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

My Daughter, The Goalie

October 6, 2010 Rachel Happiness, Parenting

My daughter Ashlynne is a senior in high school and the goalie for her school’s varsity soccer team. Her school requires that all students play a team sport, which is a very good thing, or Ashlynne would never have gotten onto the field. When she started soccer in the seventh grade, she was under five feet tall, and she usually ran away from the ball.

Then, one day, in the ninth grade, Ashlynne began practice by volunteering to guard the goal while other players practiced their shots. One of the coaches noticed that she was playing in a focused and fearless way. In fact, the coach had never seen a kid guard the goal so aggressively. After a little bit of convincing, Ashlynne became a goalie. Now, in the twelth grade, she’s 5’7″ and a team leader. Here are some photos from her first two games this season. (Ashlynne is the one in the black shirt.)































































































































Fun times!

© 2010 by Rachel Cohen-Rottenberg

8 comments

How Do You Feel About Coming Out?

October 2, 2010 Rachel Ableism, Community, Marginalization, Spectrum Pride

Some of you might have noticed that I’m blogging less about my inner workings and more about the discourse surrounding autistic people in the larger world. As I’ve watched this change happen, I’ve had some time to reflect on what’s going on.

Occasionally, I’ll get a new insight into the dynamics of how I work, and I’ll blog about it, but looking at the nuts and bolts of myself isn’t a topic that fascinates as it once did. Call it moving on from a special interest. Or just getting tired of myself. Either one with work.

I also seem to be suffering from “disclosure fatigue.” For the first year and a half of this blog, I talked about a number of different issues in my life, from family relationships to sensory issues to my feelings about being autistic. Lately, I’ve been needing to keep some things more private, and to create more distance between my public self and my private self. There is plenty of crossover between the two, even now, but not as much as before. I just have to pull back some.

When it comes down to it, I’m feeling vulnerable about being “out,” blogging under my real name, and self-identifying as autistic. I’m not sure where the vulnerability comes from, given that I’ve been “out” and blogging non-anonymously from the beginning, and that I substituted “autistic” for “Aspie” several months ago. It may be the feeling of getting caught in the crossfire between people who say I have no right to call myself autistic when I’m an Aspie, and people who look at the word autistic and see only the stigma. Both points of view lie at an extreme, and I know that people at an extreme are not usually open to reason. They are usually coming from a place of grief and fear.

I have to admit that I sometimes have the impulse to find some shelter from both groups by running back to the Asperger’s label, but it would just be a temporary refuge. Asperger’s and “high-functioning autism” are the same thing. If I take back the Asperger’s designation, it’s not as though the “if you can write, you can’t be autistic” crowd is going to lay off, or that the euphemism of Asperger’s is going to get the stigma of autism very far away from me. Any expectation that either will happen is just an illusion. I do my best not to live my life based on illusions.

The whole reason that I chose to call myself autistic rather than Aspie is that far too many Aspies seek to distance themselves from the stigma of autism. Trust me, I understand the impulse, but it’s just plain wrong to abandon people who are on the spectrum with us, especially people who are even more marginalized than we are because they don’t have the ability to “pass” for a moment. And the more I feel how wrong it is, the more I feel the vulnerability of the autism label. On my difficult days, I find myself fearing the judgment of others. I worry about whether people will see me as a collection of negative stereotypes rather than a full-fledged human being. I live in a community that largely accepts me and welcomes me, and yet, on a bad day, I find myself worrying about having to fight injustices that will break my heart.

I’m not sure what to do with the fear and vulnerability except to let them power me into strength and action. After all, there are two things you can do with vulnerability: you can fold or you can be strong. I’m taking the latter course, even though some days, it takes a major effort of will to move past the fear into power. There are so many times that I’d like to just call the whole thing off, to go back and erase the Asperger’s assessment, to forget about being autistic as some sort of weird dream, and yet, I can’t. This is who I am.

So I’m going to keep on fighting for us, I’m going to keep on being proud, and I’m going to keep on speaking my mind. And yes, I may very well come up against mind-boggling ignorance and injustice, but that’s the cost of bringing the world into a brighter day. Why should I shrink from them, when so many people around the planet have no choice but to face them down?

So tell me, dear readers, whether you use the Asperger’s label or not, how do you feel about coming out? Do you feel vulnerable? Powerful? Liberated? I would really like to know.

© 2010 by Rachel Cohen-Rottenberg

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