Archive for June 29, 2009

Why I Can’t Do What I Used to Do

June 29, 2009 Rachel Aging, Anxiety, Diagnosis, Marriage, Spectrum Pride

This morning, I ran across another amazing piece by the brilliant Amanda Baggs called Help! I Seem to be Getting More Autistic! It’s a long, informative piece about all the possible reasons that we can lose abilities as we get older. The section called Burnout especially spoke to me, setting off a cascade of feelings and associations that helped me understand why I can’t do many of the tasks and activities I once did.

Amanda explains that burnout begins because we are working at a level of energy that non-autistic people would use only in emergencies:

“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor

In the article, I would explain why my short trip to the hardware store this afternoon was followed by several hours alone in my loft, writing my little heart out. After all, if you had to walk five entire minutes to the hardware store, buy four sponges, a spray bottle, super glue, and some scotch tape, and then walk five more minutes back, you’d be exhausted, too. If you were me. Or anyone else who has tried to be “normal” for as long as I have.

But back to Amanda’s piece. In the same section, she sums up, well, pretty much my whole life to this point:

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

The problem, of course, is how do you get support services when you’ve made a seemingly phenomenal success of life? Amanda writes:

“Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.”

This problem is why I have decided not to apply for disability. I don’t think that anyone at the Social Security office could begin to understand what a difficult time I’ve having. I can’t blame them, because I’m just beginning to understand what a difficult time I’m having. Fortunately, I have Bob and his family to help me, so I don’t have my back up against the same financial wall that so many others do.

After I read through Amanda’s piece, I went downstairs to the kitchen, and I told my husband that I feel even more adamant about getting people to help with basic tasks. We’ve hired a housecleaner who is starting this Friday (yay!), but we need to continue reconfiguring our lives to deal with the reality that 1) I’m autistic and 2) he will be able to do less for me, not more, as he gets older.

From the time I was first diagnosed, my husband has used a great image to describe what has happened to my life. He said that I’m like the Road Runner in the old cartoon. The Road Runner would run right off a cliff and be perfectly fine—until he looked down. Then, he’d crash. Every time I say to Bob, “What has happened to my life? Why was I able to do so much more before?” he gives me the same answer: “You looked down.”

I looked down and saw that I’d been running off a cliff for some time. I just didn’t know it. By trying to take care of everything myself and not asking for any help, I was working way past my capacity. When I got my diagnosis, it was like finding myself in mid-air. I had to face the inescapable reality that gravity was going to win.

As Bob and I talked about the image of falling, I suddenly understood the source of my worst nightmares. Since childhood, I have had two related, recurring dreams.

In one version, I am on the ground watching a plane or a bus or a car, with people in it, zigzagging across the sky. The vehicle is out of control, and I know it’s going to crash, with all those people in it. I am terrified for the people who are going to die, and as the vehicle starts plunging to earth, I know that if I don’t wake up, I will also die. I am always able to wake up just before the vehicle hits the ground.

In the other (and even more terrifying) version, I have climbed to the top of a very high place using several ladders or flights of stairs. The problem is that the ladders or the stairs are on the outside of the structure, and I suddenly realize, to my unspeakable horror, that I cannot get down. Going back down the ladders or the stairs is out of the question. I am very high up, the stairs or the ladders are nearly perpendicular to the ground, and the sight of the earth below is dizzying. I know that if I try to get back down, I will fall and die. There is no way to get down gracefully. I stand there wondering how I could possibly have climbed all the way up without realizing that I wouldn’t be able to get back down. And then, I’m so scared that I wake myself up.

Both kinds of dreams are about an autistic person trying desperately to be a super-competent neuro-typical person. All my life, I had climbed the ladder of success, and I’d spent my life convincing people that I had it all together. And all that time, behind the scenes, I was terrified. In fact, I can barely remember a moment of my earlier life in which I wasn’t anxious or afraid about something. Now I know why. 

I was always afraid of falling off the ladder of success. I was always afraid of a “fall from grace.” I was always afraid that someday, I wouldn’t be able to “do it all” anymore. I was afraid that someday, I’d have to be who I really am.

That’s a fall from grace? What a laugh! Everyone should be so lucky. It’s been more like a fall into grace. Here I’ve fallen from this high ladder I climbed, and look where I’ve landed: I have a husband who loves me as I am, a kid who loves me as I am, friends who love me as I am, an online community that gives me a phenomenal amount of support and understanding, and a local community in which I feel safe coming out as an autistic person. So what’s not to like?

Sometimes, I wonder: If there had been an Asperger’s diagnosis when I was younger, would I rather have been diagnosed at 5, or 12, or 18 years of age than at 50? After all, I would have had many more supports and a much more realistic view of myself. But each time I ask the question, the answer is no. If I’d been diagnosed earlier, I wouldn’t be where I am right now. I can’t regret the past, because it’s brought all the people I love into my life.

Tomorrow, my husband is going with me to the thrift store. We’re going to walk around, watch how I’m feeling, and consider how I might make a place for myself there. When I told my husband that I was going to the shop tomorrow, just to get a feel for the place again, I didn’t even have to ask him to come with me. He just knew I needed him to be there.

While my life has not been the easiest life, it hasn’t been the hardest, either. In fact, it’s become a very interesting adventure. I hope it continues so.

© 2009 by Rachel Cohen-Rottenberg

12 comments

Thinking Locally

June 28, 2009 Rachel Autism-Literate Therapists, Belonging, Communication, Community, Happiness, Spectrum Pride

A few weeks back, when I decided to let go of my activities in the outside world, I had a feeling of wanting to start from my home base. I didn’t have the energy to make the hour’s drive to Massachusetts to see my OT, and I needed time away from the store to figure out how to be there without feeling like an NT impersonator. My only remaining outside commitment was to see my AS-literate therapist in New Hampshire every other week.

After my third visit to the therapist, I decided to stop going there, too. I liked the therapist very much. She was warm, attentive, and very encouraging. But the 35-40 minute trip to her office in New Hampshire felt like too much of a stretch. The drive made me feel lonely. Here I was, driving to the next state, to an unfamiliar place, to a town I didn’t live in, to get support for how to live my life back home. It made me feel desolate.

As I’ve let go of these activities, I’ve been happy to be at home much of the day, able to follow my internal rhythm, without the pressure of having to go anywhere at any particular time. I’ve been able to work in the garden, growing flowers and vegetables. I’ve been able to eat in a healthier way, and I’ve been getting exercise every day. I’ve even begun work on my book.

The more time I spend at home, the more I’m reminded that Bob and I didn’t buy a house in the center of town for nothing. We like being able to walk everywhere. We like leaving the car at home. So, it became clear that whatever I do with my life in the outside world, it has to happen locally. I have to find a way to stake my claim to the town I live in and find a place where I can be myself.

As it turns out, my decision to stay local is already bearing fruit. As I wrote last week, the manager at the thrift store told Bob that she had distributed my “coming-out” article to everyone on the staff, and that everyone was fine with it. On Friday afternoon, she sent me the following message by email:

“It has been so busy at the shop and we miss you terribly. All the staff have said is, ‘When is she coming back?’ So, please come back when you can and we will do whatever we can to accommodate your needs and to make you comfortable. We appreciate your thoughtful nature, your kind and generous spirit, your clarity, your beautiful presence. We honor your journey…come share it with us. Our very best wishes to you, my dear. Let us know how it goes. Hope to see you soon.”

Is that amazing, or WHAT? I forwarded the message to Bob, and before we lit the Shabbos candles on Friday night, he read it aloud at the dinner table. We both had tears in our eyes.

So now, I am thinking that I will start by working at the store for an hour, one day a week, just to see what I can do and how to make it work for me. I will probably end up going there more often, just to look around, because it’s a friendly place and they have lots of neat stuff there. I really love thrift stores, and it’s one of the friendliest and most interesting ones I’ve seen.

The next step is to make a time to meet with a staff person from the local school for autistic youth. I emailed my contact person last week, but I have not heard back yet. In any case, I feel good about the way that I’m managing the process.

Thank you to everyone for helping me find my way along this path.

© 2009 by Rachel Cohen-Rottenberg

8 comments

On Being True to Myself

June 26, 2009 Rachel Anxiety, Belonging, Communication, Community, Spectrum Pride

Once again, I’ve come around to the issue of how to be true to myself.

For most of my life, I’ve made a practice of emulating other people in order to know how to navigate. I’ve been so single-mindedly focused on getting it “right” that when things go “wrong,” I feel like I’ve messed up. But, in truth, I don’t mess up any more than anyone else on the planet. So why does it feel that way?

The feeling derives from an old, false belief that something is amiss inside me. Of course, when I’m thinking clearly, I know that nothing is amiss at all. I’m autistic. That’s neither good nor bad. It just is.

But I still feel divided, in a couple of ways.

1) I am firmly grasping myself by the hand and bringing myself out into the open, while at the same time, my old conditioning is kicking in and saying, “You’re doing WHAT? Hide that person!”

Now that I’ve peeled off the masks, I can see how my life experience has taken its toll on my self-esteem. All the times that I’ve been bullied, rejected, laughed at, or shunned have made their mark. And yet, miraculously, I can see that there is nothing wrong with me. When people have been cruel, it was all about them and their blindness. That’s all. So I hear the old conditioning that tells me to hide, and I say, “Well, I’ve taken your advice for half a century, and thanks for trying to help, but it’s time for you to retire.”

2) Who exactly am I, anyway? Exactly where is the line between being my wonderful, loving autistic self and pretending to be someone I’m not? Where is the line between holding onto my power and letting it slip away?

After all, I have social skills and I feel fine using them. The problem arises when I use them and pay absolutely no attention to the voice of my neurology ringing me up and saying:

Hello? Yes, I know you have social skills, but I’m getting tired…Yes, yes…of course…I know being at the store is fun…Yes, I know, but it’s been a couple of hours, and I really need to go home.

If I tune into my neurology and give it the respect it deserves, I’ll know when I’m in danger of crossing over from enjoying myself to driving myself. The problem is, how much is too much? Do I leave at the first warning sign of overload, or do I push myself a little further? I’m not sure. The answer to these questions is still a work in progress.

I feel as though I have a foot in each world—the ASD world and the neuro-typical world. I’ve got neurological wiring that makes me autistic, and I have autistic friends I’ve made online, but I also have relationships with people who are neuro-typical, and I value those relationships. I have to be able to navigate between the two. Doing only one or the other is out of the question. But how?

I’m not sure. I certainly can’t keep going with the image of having a foot in each world.  It makes me feel like I’m nowhere. But I’ve been meditating on another image, an image of threading myself through the outside world while being aware of what’s going on inside me. Sometimes, that inner self will be communicating with other autistic people, which generally feels easy to me. And sometimes, that inner self will be communicating with neuro-typical people. At times, I find it very easy to talk with neuro-typical folks, and sometimes, I find it immensely difficult. It all depends upon the person, the nature of the environment, and the state of my sensory system at any given time.

What’s most difficult is the knowledge that I have to be prepared for other people’s fears and misconceptions. If “coming out” didn’t mean running up against everything from complete acceptance to out-and-out ignorance, it wouldn’t be so difficult. The one thing I badly need to avoid is talking to people endlessly, hoping that if I throw enough words at them, they’ll understand. I don’t have that kind of energy anymore.

As far as I can see, if I want to throw a little light on the subject of autism, I have two options: I can write, and I can be true to myself. I think I’ve got the writing part down. Now I can get on with the task of being true to who I am.

© 2009 by Rachel Cohen-Rottenberg

5 comments

Still in a Holding Pattern: Update

June 25, 2009 Rachel Anxiety, Belonging, Communication, Community, Happiness, Volunteer Work

ORIGINAL POST: I’m feeling very stuck. After more than a week, I still have not heard from anyone at the store. Bob is going to stop by there today to politely inquire and perhaps gently mention that a response would help me a lot right now.

It’s not just about whether I’ll be able to keep volunteering at the store. Who knows how that will work out? Right now, it’s about the fact that I feel too uncomfortable to go to the store, just to shop or look around, because I don’t know what’s going on. Have both people I emailed been on vacation for the past week? Are they angry that I sent them an email rather than making a time to sit down and talk with them? Are they scared off by the word autism?

I don’t know. And when I don’t know what’s going on, I don’t know what to expect. And when I don’t know what to expect, I won’t walk into a situation at all. I find it so overwhelming to walk into something I don’t understand that I just stay away. If I knew where people were in their process there, I’d feel better. But I have no information.

At this point, I don’t even go near the store, because I don’t want to run into anyone who works there. It would feel too uncomfortable. What if I see someone, and they ask me where I’ve been? Or if I’m coming back soon? How will I know what to say? And even if I think of something non-committal, the interaction will still feel painful and awkward.

So I’m staying pretty close to home much of the time.

About the school for autistic young people, I am feeling more optimistic. I took my friend Sue’s advice and sent an email asking to break up my visit into smaller, more manageable portions. Here’s what I sent last night:

Hi Stephanie,

Welcome back, and thanks for your message.

The best way for me to proceed is to do things one at a time. So, perhaps one day, I could come in and meet with you to talk over what your needs are and how I can help. Then, another day, I could meet with Carol, or observe one of your summer programs. If I try to do too much in one day, I’ll get overloaded.

In general, one-to-one conversations work best for me, especially when I’m meeting new people in a new place. Once I get to know people, and they get to know my strengths and challenges, I can talk in a small group. It’s work, but I can do it.

I could come in some time next week to talk with you or Carol. Would Tuesday, June 30th work, in the late morning? Except for Friday, my schedule is fairly open right now.

All the best to you,

Rachel

Between the store and the school, I’m doing my best to be myself and to speak my truth. The problem is that I’m afraid that in doing so, I will just mess everything up. It’s happened before. I speak my truth and poof! Where did everyone go? So that’s kind of scary. Okay, very scary. Okay, so scary that I just want to cry. It’s to the point that I expect that everything will fall apart for me in the world if I come out about who I really am.

I went out today and bought some flowers for my garden. I had to get out of the house and go somewhere, and I had to cheer myself up. New perennials generally help. It’s too warm this afternoon to plant them, but hopefully, the evening will be cooler.

Thanks for listening. I’ll keep you updated.

UPDATE: Bob just got back from the store. He spoke with the store manager, who said that everyone really wants me to come back. Phew! Apparently, the time delay happened because she circulated the information I sent her to everyone on the staff (eek! I wasn’t expecting that!), just to make sure that no one saw a problem. I’m not clear whether she was asking about possible logistical problems (i.e. whether they can give me tasks to do that won’t overload me) or more personal issues (i.e. whether anyone at the store has a problem working with an autistic person). Anyway, no one saw a problem either way, and she’s going to send me an email tomorrow.

So, anyway, this is good news, yes?

This coming out stuff is rough, though. I’m feeling kind of exposed, on account of I just jettisoned all the masks I usually hide under. But it’s easier than hiding. Sometimes, it doesn’t feel that way, but that’s only because the pain of hiding is familiar. I’m not used to saying “Here I Am!” But I’ve got a feeling I could begin to enjoy the experience.

© 2009 by Rachel Cohen-Rottenberg

10 comments

Anxiety, Impatience, and Breaking a Process Down into Steps

June 23, 2009 Rachel Anxiety, Belonging, Community, Sensory Processing Disorder (SPD), Sensory Processing Issues, Volunteer Work

Less than three miles from my house, there is a non-profit, year-round day school for autistic people between the ages of 11 and 22. The school provides academic classes, work on social and emotional development, attention to fitness and sensory needs, and vocational training and entrepreneurship opportunities. The ratio of teachers to students is 1:4, and each student has an aide.

I contacted the school a couple of weeks ago, because it sounds like a place I might like to volunteer. I told them a little bit about myself—my recent Asperger’s diagnosis, my old career, my new life—and I asked whether they would be interested in my helping out. Within a couple of hours, I got a very enthusiastic response from a staff person named Stephanie. Her email began with the words “Wow! This is fantastic!” 

After some emailing back and forth, I’m in the process of figuring out the best time to go and see the school environment in action. I told Stephanie that I will need to take into consideration my auditory and visual sensitivities. Her reply, and I quote: “We’re flexible and completely willing to meet your needs.” Wow. She sent me a brochure with information about their summer program so that I could decide when to come.

So far, very good.  I am excited about the possibilities. I would be able to do some community service work with autistic people in an environment that takes our way of being into account. Being able to go somewhere and just be around other autistic people would be great for me, and being able to help support the kids coming up would give me a lot of satisfaction.

However, I’m noticing how anxious I feel over actually going there and meeting the staff. I generally get pretty anxious when I have to go to a new place and meet new people. That’s not unusual. What’s really got me going today is the fact that I can go there and be my autistic self. Arghh! Go somewhere and be autistic? I can almost feel the pathways in my brain twisting and turning to comprehend this new reality.

The anxiety is showing me the roots of my impatience. I feel so much anxiety that I want to fly over all the steps I need to take before I know whether volunteering there will work. I just want to plunk myself into a role there, have everyone be happy, and get started. The anxiety about having to go through all the steps on the way is really tough for me. It always is, but this time, precisely because I do not have to pretend to be neuro-typical, it feels even tougher. I’m so used to hiding all my autistic traits when I’m out in the world that it feels really hard to remember that I won’t have to. It feels backwards.

So, instead of being anxious and impatient, I figured that I should just take the bull by the horns and write the steps down. Then, I’ll see how harmless they really are. I hope.

1. Peruse the brochure and choose a day and time to go to the school. Send an email to Stephanie, and see whether that day and time will work for the staff.

2. The night before I go, try to get some sleep. (Okay, who am I kidding? I probably won’t sleep much.)

3. The day I go, I’ll be tired and anxious, but that will be okay. (Really? Truly?)

4. Meet with one or two staff people.

5. Spend some time in one of the classes, observing (or possibly participating in) an activity with the students.

6. Take careful note of how the environment is affecting me.

7. Talk with staff about their thoughts for how I might help out, including what days and times are best for them.

8. Go home and think about it a bunch.

9. Decide that it will work. ;-)

10. Start volunteering there. :D

© 2009 by Rachel Cohen-Rottenberg

11 comments

The Waiting Game, Part II: Help! Did I Screw Up?

June 21, 2009 Rachel Anxiety, Communication, Spectrum Pride, Volunteer Work

I’ve done it again. I’ve gone and spoken the truth, and now I’m wondering whether it was such a good idea.

Not that I would prefer lying, mind you. But I know that on the continuum between Telling the Truth and Lying Your Face Off is a vast, uncharted wilderness called You Know, You Don’t Have to Say Anything At All. It’s a place that I’ve been, many times, but I never feel quite at home there. I inevitably pack it up and head in the direction of Telling the Truth.

In the month of June, I’ve not only reached the land of Telling the Truth. I’ve also bought a house there, planted a garden, run for mayor, and used a megaphone to inform everyone of The Truth About My Life. I did it all quite consciously, knowing that it might not, er, work out as I’d hoped. The problem is that I don’t know whether it’s worked out or not. I’m still waiting to find out.

I hate waiting. I think I’ve mentioned that before somewhere.

So here’s what I did:

Submitted an article
June 7: I submitted a Viewpoint article to my local paper about my Asperger’s diagnosis and the top 10 worst myths about autism I’ve had to excise from my brain in order to keep my sanity be a proud and happy autistic person. The article will go onto the paper’s website some time later this month, and it will appear in the July issue of the paper, which can be found in various places all over town. I wrote the article in order to a) come out as an autistic person locally, b) advocate for autistic people, and c) let other autistic people in town know that I walk among them.

Given that the article hasn’t come out yet, I’m shaking in my shoes thinking, “Can’t I just go back to thinking I’m neuro-typical-and-neurotic instead of autistic-and-eccentric? It’s not too late to get the toothpaste back in the tube. Is it?” Then, I realize that yes, it’s too late to turn back now, and the shaking-in-my-shoes thing gets a little worse.

Wrote to an old friend
June 11: I wrote to an old friend from high school. The reason I made this stupid move decided to email him is that I was looking over a set of pictures he’d taken of me as a graduation present in 1976. I was looking at them because I was getting started on my book, and I needed to put all the pictures in one place. So, I wrote to him, and I told him that I was writing a book and had found all the pictures. I wanted to let him know that I still had the pictures, and that they mean a lot to me. It was a very short, friendly email.

On June 12, I got a really nice response, in which he was very excited to hear from me, had added me as a friend on his Facebook page, wanted to know what I’d been up to, and asked me about my book. (I’ll bet you know what’s coming, don’t you?) He also said that he’d love to see some of the photos. So, the same day, I wrote him back, told him about Bob and Ashlynne, where we live, what we do with our time, and yes, that I’m writing  a book about my life-with-Asperger’s-Syndrome-a-high-functioning-form-of-autism-and-that-learning-about-my-AS-has-been-a-great-blessing-in-my-life. I also attached four of the photos he’d wanted to see, which I had on my computer because I’d put them in a blog post.

I’m still waiting for the response that I know will never come. I used to put my foot in it and mention being an abuse survivor. Now I’m doing it with being autistic. But, hell, when people say “Hi, how are you, tell me about yourself and what you’ve been doing,” I can’t just say, “Hi, I’ve been doing just fine, I go to church every Sunday, and my life has been bliss.” I just can’t. I can’t, I can’t, I can’t. I don’t know whether it’s my brain or my heart or some evil demon who possesses me when I write emails to people I haven’t seen in 30 years, but I can’t help it. I have to tell them Who I Really Am.

It tends to put people off. I don’t get that. Yes, I know, there’s this whole little stupid social dance thing I’m supposed to do, but life is short and I have no interest in dancing around the truth.

Sent an email to two local people
June 17: I sent a copy of my “coming out” article to the store manager and volunteer co-ordinator at the store. I had emailed them previously, telling them that I needed to take some time off. They each sent me beautiful emails, and the store manager said that if there was anything they could do, I should ask. I had decided before I wrote my reply that I couldn’t go back to the store without coming out about being an Aspie. I’m sick of hiding. I just can’t do it anymore. So, when I sent my email, with the article attached, I told them that I really missed the store and that I wanted to sit down with them and figure out how I could best help out there.

Now, I know that a lot of people don’t read their email everyday. I also know that the store manager isn’t there every day, and that the volunteer co-ordinator just had a baby and is working reduced hours. I also know that maybe they need some time to digest what I wrote. My husband has reassured me that everything will work out, because they already love what I do there and finding out about my autism won’t change that. My therapist said exactly the same thing. Given that both Bob and my therapist are very down-to-earth, sensible people, I know that I should listen to them.

I also know that if the response is negative, it will actually be a good thing, because at least I’ll know that I should put my energy elsewhere. But I don’t want to put my energy elsewhere. I would really like to be at the store again. I miss it.

This waiting is so hard. I’ll keep you posted.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Now You’ve Done It!

June 19, 2009 Rachel My Books, Spectrum Pride

Go ahead, twist my arm. Suggest that I write a book. Like writing isn’t something I have to do, just to keep myself from spontaneously combusting.

You know who you are, you seemingly innocent blog friends. You’re the people who keep dropping little hints about putting the story of my life into print. One suggestion here, another idea there, and before you know it—I’m actually writing a book. About my life!

The book will be a memoir, and I’ve asked a friend to handle the design. She designed my last book and did a beautiful job. As on the last go-round, I’ve decided to go the self-publishing route. I briefly considered the idea of sending my little masterpiece-to-be to a publisher, but I’ve decided against it. I don’t like the idea of some neuro-typical editor-stranger messing one iota with the product of my feverish autistic mind.

Yes, I like control. And independence. Haven’t you noticed?

Anyway, thanks everyone. :D

© 2009 by Rachel Cohen-Rottenberg

8 comments

When Will I Ever Learn?

June 18, 2009 Rachel Communication, Marriage, Social Gatherings

Last night, I did something that I should have known wouldn’t work. But because I’m still winding down from trying to impersonate an NT, I did it anyway. And today, I’m a bit of a wreck.

Do you want to know what I did? It will knock your socks off. Really. You’d better be sitting down for this one. I’m serious. If you fall over and bump your head on the floor, it’s not my problem.

Here’s what I did: I went out for dinner with my husband, my daughter, and one of her best friends.

That’s all. Really. There’s no more to it. The part of my brain that still thinks I’m neuro-typical says, “That’s all? That’s a mistake? What the hell is your problem?”

Fortunately, a great deal more of my brain understands that I’m autistic. Those parts of my brain are all acting in unison, saying, “Try and explain to the nice people who read your blog why going out for dinner with three other people was a serious lapse in judgment.” So I will.

Here’s how it went: I spent the day gardening yesterday, and I felt great. About 5:00 pm or so, my husband said, “Do you want to take the kids down the street and get some Thai food?”

I simultaneously thought, “No!” and “Yeah, that’d be great!” The reason it felt so great is that we all love Thai food, the restaurant is a short walk from our house, the people who run it are incredibly friendly, and the last time we went, they made special provisions for my inability to deal with lots of noise.

The last time, it was just Bob and me, and the place was very crowded. There were several small, adorable children, making several loud, repetitive, adorable, childlike noises, and after sitting at the table for a minute or so, I realized that I’d never make it through dinner in one piece. There is a quieter part of the restaurant, and Bob asked whether we might sit there. The response was that they don’t usually open up that space for dinner, but they understood that I couldn’t enjoy my meal otherwise, and they were gracious enough to seat us well away from the noise. We ended up having a very good time there, and we thanked them profusely for being flexible.

Yesterday, this lovely experience was in my mind when I said, “Yeah, that’d be great!” I figured that if things were noisy, we could just sit in a quieter part of the restaurant. I forgot about the part where sitting and talking with more than one person at a time is impossibly difficult.

Sitting with Bob is simple. It’s very little work. Sitting with Bob and Ashlynne is a bit harder, but because I know them well, and they respond to my need to slow a conversation down, it’s quite doable. Sitting with Bob and Ashlynne and her friend (who is a regular and welcome visitor to our house) is exponentially harder. And did I mention that Ashlynne and her friend are teenagers, and that like many neuro-typical teenagers, they talk very, very fast? Consider it mentioned.

So there we were, sitting at the table, and very quickly, I began to feel like the boring autistic person in the group. Everyone else was bright and chipper, and I was feeling like a dud because I couldn’t keep up. At that moment, it did cross my mind to leave, but that’s when the habit of pretending to be neuro-typical kicked in. And such a bad habit it is, too.

So, I stayed for the entire dinner. I tried to keep up. I asked questions. I made jokes. I responded to the things that other people said. And I tried very hard to mask the fact that I was getting disoriented and exhausted. Of course, I was keenly aware of what a strain it was. I was conscious that I was dissembling, and that my face was not reflecting the enervating effect of every word that was coming out of my mouth. The whole experience was very familiar, especially the part when the migraine started coming on. Somehow, the familiarity of the strain I was under made it that much harder to detach from the situation and get out of there.

And I really wanted to be there. I enjoy Ashlynne and her friend, and it was fun to watch them have a good time together. And yeah, okay, I didn’t leave because, goddammit, why should I? Why should I have to leave when everyone else is having so much fun?

When the girls finished their meals, they decided to go, so Bob and I got to sit alone for a little while. By that point, I was pretty much down for the count. As we were walking home, I told Bob that the whole thing was very, very hard for me, and that I probably shouldn’t try it again. It was difficult for me to translate the experience for him, so I finally said, “Suppose you had to get some cans down from a very high shelf, and that the best you could do for an entire hour was to jump, and never quiet make it, over and over and over, except that every now and then, you actually touch one of the cans, which makes you want to jump and try it again. That’s how it feels.”

He nearly shivered at the thought, and we talked a bit about the difficulties of autistic-to-neuro-typical translation. When we got home, I realized that it would really help me to show him Amanda Baggs’ In My Language video and look at her blog with him. And it did help. I wanted him to have more of a sense of the dissonance between how a person seems on the outside and what’s really going on inside. He was very taken with everything I showed him. He’s always been supportive, but her blog helped him understand more about how I work and how I feel.

So that was a very good outcome of the whole disaster.

Today, however, I’m paying for it. My bladder hurts. My neck aches. And despite having slept in for half the morning, I’m physically and emotionally exhausted. Fortunately, I can still write. Later on, I’ll get under my weighted blankets and rest.

© 2009 by Rachel Cohen-Rottenberg

13 comments

The Waiting Game: A Conversation with My Nervous System

June 16, 2009 Rachel Anxiety, Sensory Processing Disorder (SPD), Sensory Processing Issues

A few weeks back, I had an email conversation with a friend about the difficulties of waiting—specifically, about waiting all day long for late-afternoon or evening appointments. 

Today, I’m struggling with this difficulty, and it’s my own doing. I scheduled a 4:30 appointment with my therapist this afternoon. It’s the only one she had available today, and since my husband can drive me there, I took it.

Silly me. When will I learn? The entire day leading up to an appointment feels so compressed. In order to get anything done, I have to think backward from the scheduled time: “Let’s see, if the appointment is at 4:30, I have to leave here by 3:45. That means, I’ll need to get my workout done by 3:00, so that I can take a shower before leaving…” I’d like to go on, but my head feels like it’s about to blow a circuit. I have enough difficulty sequencing tasks in a forward direction. Trying to sequence them backwards makes me want to weep.

In any case, while I’m waiting, I feel like my engine is revving, but I’m not going anywhere. It’s very difficult for me to do anything when I’m waiting. Even on a day like today, when I’ve cleared my schedule, the anxiety has been steadily increasing with every passing hour. As my OT would say, my nervous system is trying desperately to get my attention and defend itself. It’s as though I’m having the following internal conversation:

Me: “Why am I getting so agitated?”

My nervous system: “Excusez-moi? Do the letters AS mean anything to you? How about SPD? Ring a bell, any of it?”

Me: “Look, I scheduled an appointment for 4:30. With my therapist. What’s the big deal? It’s not like I’m asking you to do ten different things today. One. Just one.”

My nervous system: “Okay, look, it’s hard being with other people.”

Me: “Why? What’s wrong with other people? What are you, a goddamned misanthrope?”

My nervous system: “Ooh, wow, a big word. I’m in awe. You know, if you take that tone with me, I’m just going to get more agitated.”

Me: “Okay, okay. For goodness sake, just answer the question. Please.”

My nervous system: ”What question?”

Me: “What’s wrong with other people?”

My nervous system: “It’s not that anything is wrong with other people. They’re perfectly lovely. You’re perfectly lovely. Everyone’s perfectly lovely. Okay?”

Me: ”So, if we’re all so lovely, what’s the big deal?”

My nervous system: ”In case you’ve forgotten our conversation of, let’s see, the last five decades, I’ll tell you what the big deal is. Other people are a lot of work for me, especially if I have to get in a car to see them, or they’re in some unpredictable environment where someone might be talking too loudly, or….I don’t even want to THINK about all the stuff that could happen.”

Me: “Oh, come on, you’re getting overdramatic. We live in crunchy-granola-ville, for crying out loud. The worst thing that could happen is that we’ll meet someone singing Kumbaya.”

My nervous system: “Are you not listening? It’s not about whether the people are nice. It’s about dealing with people. Period.”

Me: “Well, you used to be able to deal with people. All day, every day.”

My nervous system: “Oh, G-d, not this argument again.”

Me: “What argument?”

My nervous system: “You know very well what argument. The one in which you want to know why I can’t keep breaking my ass for you constantly, like I used to.”

Me: “Oh, right, that argument. Well, why can’t you…Sorry.”

My nervous system: “Apology accepted.”

Me: “So, what’s so hard about being around people? Everyone ELSE does it.”

My nervous system: “Look, I’m not everyone else. I’m me. And for me, it’s work. Work, work, work. And then some more work. And then even more work. And oh, I forgot. Some more work after that, too.”

Me: “Yeah, but why is waiting so hard? Why can’t you just get agitated when we get to the appointment?”

My nervous system: “Look, dealing with one person in the outside world is work. And now, because you thought absolutely NOTHING of what I might need, you’re going to make me wait ALL DAY LONG, in suspense, getting ready for the fact that going out and seeing another person is going to be a lot of work. Gee, thanks. I only allow you to think, breathe, walk, talk, and eat. But don’t worry about me. I’m not all that important.”

Me: “Enough with the guilt trip. And calm down. Take a breath. Be here now.”

My nervous system: “Who do you think I am, the Dalai Lama? I’m not. The Dalai Lama is a bodhisattva, and G-d bless him, but I am an Aspie nervous system, and I WOULD LIKE A LITTLE RESPECT.”

Me: “Why are you shouting at me?”

My nervous system: “I try to ask nicely. I really do. But then, after all the many, many conversations we’ve had, you still insist on scheduling late-afternoon appointments, and it’s hard on me. I’m shouting to get your attention.”

Me: “Sorry. I’m doing the best I can.”

My nervous system: “Me, too.”

Me: “Friends?”

My nervous system: “I’ll believe it when I see it.”

I’d better go do my workout and get my nervous system to calm down. After all, we’re working on our relationship, and I need to do my part.

© 2009 by Rachel Cohen-Rottenberg

11 comments

What Does “High-Functioning” Really Mean?

June 14, 2009 Rachel Autism-Literate Therapists, Communication, Diagnosis

More and more, I’ve been trying to avoid making a distinction between Asperger’s Syndrome and autism. Such a distinction feels needlessly divisive and confusing. The new report of the DSM-V Neurodevelopmental Disorders Work Group does away with the distinction altogether, removing the category of Pervasive Developmental Disorder (PDD), and replacing it with the umbrella term of Autism Spectrum Disorders (ASD). If the logic of the new draft is accepted, PDD-NOS, AS, and autism will fall under a single diagnosis of ASD, with varying degrees of severity.

I like simplicity and coherence, so this whole idea appeals to me. Given that AS is an ASD, the present distinction between AS and autism is maddening. And I’m not just saying that because verbal logic appeals to me. Fairness and honesty appeal to me, too. Saying that I have Asperger’s Syndrome feels more and more like a fancy way of distancing myself from the word autism, with all the fear and trembling that the term engenders in the general population. 

Enough of that. Time for some solidarity. The first order of business is to stop this nonsense and start using the word autism early and often.

I recently wrote an article for my local paper about my autism diagnosis and all the myths I’ve had to dispel in order to see myself clearly. In the article, I wrote that I was diagnosed this past November with “Asperger’s Syndrome, a high-functioning form of autism.” From that point on, I used the term Asperger’s Syndrome only two more times. In contrast, I used the word autism nine times, and the word autistic twenty-six times. I wasn’t particularly conscious of making these distinctions when I was writing the article. They just happened.

So, that’s progress. I’m about to come out in my local community as a full-fledged autistic person. Doing so feel absolutely right.

But then there’s this high-functioning adjective that appears every single time I define Asperger’s Syndrome. At the moment, there is no consensus in the scientific community about what high-functioning actually means. From what I can gather, it generally describes autistic people with a) average or above-average intelligence, b) a desire to relate to other people, and c) relatively normative language acquisition (even if language development happened a bit later than the norm).

Well, great. I can basically demolish all three parts of the definition in about five minutes:

a) Using an IQ test that relies upon verbal skills (such as the WISC) is not an adequate measure of the intelligence of autistic people.

b) Just because a person doesn’t show a desire to relate to other people doesn’t mean that he or she doesn’t have a desire to relate to other people. 

c) Using verbal language is only one way of relating to one’s environment and the people in it.

So what does high-functioning really mean? To me, it means that we can pass in a neuro-typical world. It means that we know how to pretend that we’re no different from anyone else, and that we have marvelously adapted to the norms of the larger community. The higher our functioning, the less of a nuisance we are.

Why, oh why, oh why does the world insist on defining high-functioning by how we appear on the outside, rather than by what’s happening on the inside? Perhaps it’s the neuro-typical reliance on reading nonverbal signals and making an educated guess about what’s going on inside. Do most people simply make the assumption that mind-reading is possible? Do they assume that they don’t have to go to the next level and ask us what’s going on inside? It certainly seems that way.

I’m perseverating about this whole issue right now, because last week, my AS-literate therapist said something that’s been bothering me. She told me about an Asperger’s support group starting in her area, and before I got a chance to get too excited, she said that I might not like it. When I asked her why, she said that most Aspies don’t have my social skills or level of insight.

Oy. Just when I thought she knew what she was talking about.

How does she know about my supposedly great social skills? From two sessions in her office? Yeah, I can definitely navigate my way around a therapist’s office. After all, it’s a highly structured, one-on-one interaction in which I’ve only had 25 years of practice.

I wonder what she’d think if she saw me out in the world. Actually, she might arrive at the same conclusion. I can fake it pretty well. The problem, as I described it to her, is that the gap between how I feel inside and how I appear on the outside is widening every day. She nodded her acknowledgment, but I don’t think she really understands what a crisis this is for me.

And as for my having more insight: Just read the comments to this blog. Or the content of any other AS blog. Or WrongPlanet. Or the many autobiographical books written by autistic people. Given that we don’t just yack all day long about nothing, we’ve had a fair amount of time to quietly observe human interaction and draw some amazing conclusions.

The truth is that I don’t feel particularly high functioning—at least, not in the way that the larger world defines it. There are so many basic tasks that are becoming more and more difficult—driving, cleaning my house, and food shopping. Being around other people right now is close to impossible, because while I’m sick of impersonating a neuro-typical person, I’m not quite sure what the alternative looks like. Plus, my sensory issues make spending large blocks of time with other people very difficult. I feel everything so acutely that it takes me days to recover from things that most people just shrug off.

So, I don’t know whether I want to keep going with using the high-functioning label. Why can’t I just say, “I have Asperger’s Syndrome, a form of autism” or even “I’m autistic”? After all, based on my behavior, people will draw their own conclusions about me. In fact, they may even be confounded by the idea that an autistic person can do whatever it is that I do.

Confounding people is the first step toward breaking down their stereotypes about autism. And that, my friends, is a very good thing.

© 2009 by Rachel Cohen-Rottenberg

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