Journeys with Autism

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?”

© 2010 by Rachel Cohen-Rottenberg

As most of you know, I volunteer for a thrift store that benefits the local area hospice. Several weeks ago, I told the store manager that I sew, and since then, I’ve been up to my elbows in different kinds of mending and restoration projects. I even bought a sewing machine to help the process along, although I sew by hand when mending quilts that are hand stitched.

A couple of weeks ago, the store manager showed me some chair cushions that she wanted me to re-cover, so we started with the ugliest ones. They are (or should I say, were) ugly in a kind of 1970s polyester way. At first, I tried replacing the material altogether, but then decided that it made more sense to sew new material onto what was already there. For the front and back of each cover, I used my sewing machine. For the side panels, which had to be sewn around a zippered opening, I sewed by hand. Here is a picture of the two covers. The one on the right is the original, and the one on the left is my beautification of it:

Yes, the border around the original was made of a kind of tinsel-like gold color that should simply be illegal to use in a home furnishing. It’s an affront to the senses. When I wasn’t working on the covers, I had to hide them under other material in my loft so that I couldn’t accidentally catch sight of them.

I brought the finished cushions into the store yesterday, and the manager was so happy with them that she brought the chair up right away to sell. When I went in today to take a picture of it, I learned that it had already been sold, but was being held for pickup downstairs. So I went down and took some photos of it. Here’s the best one:

I love doing this work, and the people at the store are nearly ecstatic about it. Everyone seems to have adjusted to my not talking or hearing, and they are very appreciative of what I do. They write me notes, show me what to do, and treat me with a lot of kindness. I’m getting less and less self-conscious about my headset and my silence, and more and more able to rest easy in the knowledge that I use them to work with my disability (in the same way that I would use a wheelchair if I couldn’t walk).

It’s good to feel part of something again. It’s been a long time coming.

© 2010 by Rachel Cohen-Rottenberg

I’ve signed up to take an introductory course in American Sign Language. The class begins in early September.

Initially, I had two reasons for signing up. First, because I hope to volunteer at a school for the deaf, I want to learn the local language. Second, when I’m out in public wearing my headset and people want to interact with me, I want to have some way to communicate that I can’t hear or speak. At the thrift store, I now wear a tag on my shirt that says, “I have a hearing disorder. Please ask a staff person for assistance.” It works just fine, but I can’t possibly make enough tags to cover every situation in which I might find myself. I have to be able to communicate in some recognizable way. Of course, if I sign, most people won’t know the particulars of what I’m saying, but they will recognize ASL when they see it and draw the appropriate conclusion. In addition, I’ll feel that I’m communicating, just as if I were speaking French or Hebrew. I won’t feel so anti-social, so cut off, so frustrated about how to let people know that there’s a human being in here. 

When I got the registration materials in the mail, another reason for taking the class nearly jumped off the page at me: each two-and-a-half-hour session is carried out entirely in ASL. No voices. Just signing. Full, silent immersion, once a week. Can you imagine? A room full of quiet, hearing people? I know you can find them at silent meditation retreats, but I don’t meditate and besides, I want to communicate with other people. I just don’t want to have to speak all the time.

For much of my life, I was a stereotypical, talkative Aspie. I could talk anyone under the table. Anyone. Of course, I completely exhausted myself and everyone else, but the point is that, once upon a time, it was possible. My husband would probably tell you that it’s still possible, because as he said the other night, “There are always a lot of words flying around in this house.” And it’s true: I can talk his ear off. But these days, he’s really the only one with whom I ramble on, and to tell you the truth, I’m starting to wear myself out.

As I look back, I understand so much about my formerly talkative self. Although I didn’t know it at the time, talking a blue streak was my favorite way of fending off the prospect of auditory overload. If I could talk at someone, they never got a chance to overwhelm me. If the person were just as talkative as I was, it didn’t matter. It was like upping the ante at a poker game. I could get out in front and stay there. Of course, I was tiring myself out, but at least I was in control of the situation.

Well, sort of.

Another great thing about this strategy was that I didn’t have to face the fact that I couldn’t initiate a typical conversation. I didn’t have to confront my ignorance about where to jump in, when to step back, and how to stay in the flow. I didn’t have to face my awkwardness or my shyness. I didn’t have to register the fact that I couldn’t process another person’s speech as rapidly as I thought I could. I’d just go on a rant or a ramble with my favorite topic and talk myself into oblivion.

And now, it seems, I’ve used up the greater part of my lifetime quota of speech. It feels a little weird, but that’s life. Some days, I’m comfortable having conversations with other people, and some days, I’d just as soon not try to summon the energy.

So much for speaking. But then, there’s listening. There’s being out in the wide world, with all kinds of conversations going on around me, and not being able to attend to one at the exclusion of another. I hear everything, loud and clear. And of course, because I hear everything, I try to follow everything. My brain says, “Oh, these people are talking. I must process what they’re saying.” It’s completely involuntary. When people are talking about something interesting, sometimes it’s worth the effort (until I crash and burn at the 10-minute point). But when people are talking about nothing at all, when they’re engaging in social niceties, when they’re filling up space with chitchat, when they’re saying words whose purpose I cannot possibly comprehend, then all that brain processing is a complete waste of time.

I will concede that when people seem to be “talking about nothing,” they may actually be communicating meaning by the tone of their voices, their body language, and the associations that words carry between friends. But since I don’t see any of those nuances, I just process a whole lot of (apparently) meaningless words like, “Yeah, great to see you, too. Yeah, we just got back from the beach. Yeah, it sucks being back from vacation. Yeah, you look great. Yeah, good to see you, too.” And in the process, I get a little angry. Until recently, I never understood why. I thought perhaps I was a misanthrope, or angry at my parents, or a madwoman cleverly disguised as a sane human being. But now, I realize that when my brain works on chitchat, it’s working very, very hard on nothing. Working hard on nothing would make anyone a little annoyed.

Now that I’ve figured out that I don’t want to talk much in public and that I cannot leave my ears unprotected, exactly how do I navigate? Well, I know (at least theoretically) that I can put on my headset and go to the grocery store, the post office, my therapist’s office, the bank, and the pharmacy. I’ve got my “I can’t hear you” cards at the ready, and life is good. This strategy will likely work fine for errands, but for longer stays out there in the world, I’m having difficulty getting comfortable with the idea of not hearing or speaking.

For instance, last Thursday was the second day I’d worked at the thrift store with my headset on. The staff knows why I wear it, and that I have a new version with a “push to listen” button on one side. If any staff member needs to talk to me, I can push the button and listen without taking the entire headset off and hearing everything going on in the store. The staff seems fine with my adaptive measures, but I feel the pressure of social expectations weighing down on me like a force. There I am, in the linen department, focusing on my work, organizing everything to my heart’s content, and pretending that no one else is there. That feels weird. After all, I’d love to be able to act like my old, closeted self, smiling at people and offering my help, but I can’t. It’s just not possible to be in people mode and task mode at the same time. 

I don’t think that anyone else is consciously beaming social expectations in my direction or trying to control me with their sense of how I must be. I feel the social expectations coming from inside myself. I’ve internalized so many of them—that I must smile, that I must make eye contact, that I must show interest, that I must be pleasant, that I must play my part to give people a good experience of me, and on and on and on.

But I can’t do it anymore. I have to protect my ears. I have to conserve my speech. I have to be careful of how much energy I use for any given task.

I’m hoping that ASL will help me develop safe boundaries for sound and speech while I create bridges to other people. As much as I enjoy the experience of silence, I need to communicate that there is a human being in here, and that I’m not simply an anti-social creature with a funny headset.

© 2009 by Rachel Cohen-Rottenberg

My plan for this week was to meet with my new Aspie friend on Monday and to try working at the thrift store on Thursday. To make this plan workable, I began implementing my new strategy of giving myself two days at home to rest and recharge after I spend time with people outside my family. Monday’s visit went swimmingly, so after two days to myself, I decided to give the thrift store a try.

I was just as anxious this morning as I was before Monday’s visit. I gave myself plenty of time to have a workout and a good breakfast so that I could be as relaxed as my Aspie nervous system would allow. I now own a Thumper massager, and Bob used it on my back before we went to the store. I wanted Bob to walk me there and to do some errands nearby so that I’d get to see him once or twice during my shift. Having a much-loved and familiar person there seemed very important for re-entering the life of the store, and his presence was very reassuring (as always).

The reception that I got from the staff was WONDERFUL. Several people gave me hugs, and everyone was very happy to see me. I asked for something quiet to do, perhaps in the linen department? The housewares manager pointed to four baskets of linens and said, ”I just finished pricing these. You can put them out if you like.”  Heaven!

I worked in the linen section for an hour and forty-five minutes, organizing everything to my heart’s content. There were all kinds of things to put out on the shelves: towels, sheets, pillowcases, tablecloths, runners, placemats, napkins, potholders, curtains, pillows, blankets, and quilts. In addition to putting out the new items, I organized all the items that were already out, which was no small task. You never realize how messy linen departments get until you’re the person who straightens it all up. Because I like organizing just about anything, I had a wonderful time at it and was very proud of how everything looked when I was done.

My only annoyance had to do with my Sonic Defender earplugs. They’re made to block out loud noise but still allow for normal conversation. Usually, I can wear them when I’m out and hear Bob pretty clearly. In the store, however, in order to hear anyone properly, I had to take one of the earplugs out every time. I didn’t mind taking the earplug out so much as getting it back in, which is always a bit of a chore. It’s possible that I know Bob’s voice so well that I hear it better than anyone else’s when we’re out in the world; it’s also possible that he knows to speak clearly when I’m wearing the earplugs.

I’m going to have to come up with a better plan for ear protection. I might just use my foam earplugs and then wear a small stereo headset unattached to an iPod. The foam earplugs are very simple to put in or take out, and with the headphones on, people will think I’m listening to music. They’ll either decide not to talk to me at all, or they’ll tap me on the shoulder to get my attention. Either way is fine with me. The store is a relatively quiet place, but there are lots of conversations that would distract and overload me without ear protection.

I’m in the midst of doing some research into whether I can get a pair of hearing aids that actually deamplify sound. It seems to me that if you can put something into your ear and turn up the volume, you ought to be able to put something into your ear to turn it down. I’ll let you all know if I discover anything interesting along these lines.

Apart from my frustration with the earplugs, my time at the store today was a great success. I was so happy to be there and to see everyone. And I’m very glad that I am officially “out” to the staff. I feel very comfortable with people knowing that I’m autistic. I don’t feel pressured to be a certain sort of person anymore, I don’t mind being awkward, and I don’t have any inclination to fake being NT. Why on EARTH would I want to do THAT? Being autistic is so interesting!

© 2009 by Rachel Cohen-Rottenberg

I’m about to say goodbye to my idea of volunteering at the local school for autistic youth. The reason? I’ve tried several times to articulate what I need in terms of how to structure my visits to the school, and I don’t feel like I’m being heard.

When I first wrote to the school, the person who answered the email seemed very enthusiastic about having me volunteer there. The hard part for me was the fear of getting overwhelmed by going to the school, meeting the teachers, watching the program, and then deciding how to proceed, all in one day. Thanks to the advice of my friend Sue, I decided to see whether I could break the meeting times into smaller pieces. Since my contact person had said, “We’re flexible and completely willing to meet your needs,” I felt confident about telling her exactly what I needed regarding my sensory issues. On June 24th, I wrote:

“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.”

I didn’t hear anything back at all for more than two weeks. As Crystal mentioned in response to a previous post, neuro-typical people sometimes get distracted and forgetful about things, but they don’t realize that we Aspies often need an answer one way or the other so that we can get on with our lives. That’s how I was feeling. I didn’t want to write again after I’d been so clear, so my husband offered to call the school and let them know that I needed an answer. The woman he spoke with was very apologetic and said they’d be willing to have me do whatever I’d like.

So, I wrote to my contact person again about setting up a time to meet, and this was part of her response:

“I think the best thing is for you to meet with me briefly and  then  observe so
you can see how we’re set up, so you have a better idea of what you’d like to do to volunteer. I’m open for anything that works for you!”

I know that this person is well-intentioned and very busy, but her response bore very little relation to what I had earlier said.  She says she’s open to anything that works for me, but she’s not responding to what I actually said would work for me. What I needed was to sit down with her and discuss what the school’s needs are before I observed the program.

Despite  my growing frustration, I decided to go on the assumption that she is too busy to meet with me separately from my tour of the school. Based on this premise, I took a different approach: I suggested that she tell me what the school’s needs are by email. Here’s what I wrote yesterday:

“Before I come in, I’m wondering whether you could send me an email with a
list of things I might be able to do as a volunteer. Having something to
think about ahead of time would give me a framework for observing your
program. When I’m walking into a new situation, I always do best with some
kind of structure.”

Could I have been any clearer? Here is a portion of the response I received this morning:

“It’s hard for me to give you a lot of information since we’re really flexible on
what people want  to do.  You could basically do anything. I honestly think you’d do
best if you came  in to visit with me…and then took a tour of the facility. That way,
you could see the students and  assistant educators in action and could get a feel
for the flow of our school. “

There are three problems here:

1) I don’t do well with being told that I can basically do anything I want. I need specifics, and I made that clear.

2) She told me what she thought would work best for me. I really dislike that, especially when I’d already told her what I know would work best for me.

3) She suggested that I come in, meet with her, and tour the facility on the same day. That’s precisely what I said I did not want to do.

I feel really sad. I don’t see a way to continue this conversation and get what I need.  We’re obviously talking at cross-purposes. I am trying to get her to do something she doesn’t want to do, and she is trying to get me to do something I don’t want to do. I don’t see a way out of this impasse.
 
© 2009 by Rachel Cohen-Rottenberg

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

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.

© 2009 by Rachel Cohen-Rottenberg

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

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg