Archive for Marriage

The Perfect Answer

November 28, 2011 Rachel Ableism, Marriage


Why do you stay in the marriage?

An acquaintance recently asked my husband this question. He asked it not because my husband had expressed any unhappiness with our marriage, but because I have Asperger’s.

How do I begin to explain all the ways in which this question hurts?

Let’s start with the assumption that my husband must be unhappy in our marriage, despite the fact that we are both quite delighted to be married to each other. It’s rather common for disabled people to hear others make that assumption. It’s an assumption based on the notion that disabled people are a trial and a tribulation to those who love us. So I knew, at that moment, that I wasn’t alone. It was somewhat comforting to know I wasn’t alone, but mostly, it was very painful to know that I wasn’t alone, and that so many of us still go through these experiences.

And then, there is a stereotype at work here, an assumption that people with Asperger’s are all alike, and that we make relationships difficult simply by virtue of being autistic. Somehow, when one partner has Asperger’s, generalizations replace specifics, and the idea that relationships are a two-way street, in which each party can be a challenge to the other, gets lost.

While I was still reeling from having heard the question, only one answer came to mind, and it was the answer I was hoping my husband had given:

Because I love her.

It’s not the one he gave. I was disappointed at first. When someone implies something negative about me, I immediately go to the place of wanting my husband to profess his love for me, in a very loud and declamatory voice, from the nearest rooftop.

But now I’m glad he didn’t give that answer. Simply saying that he loves me runs the risk of implying that he stays in the marriage not because of what I bring, but out of something akin to heroism. It ignores the ways in which I ground his life, in which I nourish his heart, in which I support him in all of his struggles. It has the potential to reinforce the notion that, because of my disability, I am a burden that he carries with saintly patience. And it suggests that he should have to profess his love for me, rather it simply being a given, as it should be for any husband and wife.

So he didn’t say he loved me. Instead, this is what he said:

Because it works for me.

It’s a brilliant answer. It really is. It takes the entire conversation out of the realm of disability and into the realm of why anyone stays in a marriage. You stay because it works for you. It may be hard work sometimes, and it may be a rocky road sometimes, but that’s marriage. Certainly, you also stay because you love the other person, but that’s not enough to keep a marriage going. Lots of people who love each other break up because the marriage stops working for one or both of them, and because there is nothing that anyone can do to fix it.

So yes, my husband is married to me because it works for him. And I am married to him because it works for me. Each of us can be a trial to the other at times, but the same is true for any two married people. We are not married despite the challenges each of us puts in the path of the other, but because of them. They help us to grow, to love, and to understand life in ways that we could never begin to do without the other.

© 2011 by Rachel Cohen-Rottenberg

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Cognitive Empathy at the Dinner Table

July 12, 2011 Rachel Empathy, Marriage

I’ve long felt that everyone has difficulty with cognitive empathy and perspective taking when it comes to minds that work differently from their own. A couple of weeks back, I had an interesting experience along these lines.

At the dinner table, I asked my husband Bob the following question:

Do you think I’m odd?

Now, if you’re on the spectrum, you probably realize that I asked the question because I wanted to know what he thought. If you’re not on the spectrum, you might wonder whether the question were a setup, along the lines of Do you think I look fat?

My husband, who is neurotypical, was absolutely stymied. Now, please understand that he is a very empathetic man in every sense, and that he is also very socially adept in conventional ways. He can read most people extremely well. He’s very sensitive. He’s the sort of person who can listen to you and make you feel like you’re the only person in the room. He can also can walk into a large social situation and chat it up with anyone. I’m often in awe of his social graces.

But when I asked him the question, he hesitated. He looked very uncomfortable. In fact, he had a look on his face that I recognized immediately. It’s the one that I’m sure I have on my face in most social situations. It was as though he were thinking about all the possible ways he could respond and couldn’t figure out which one was the right one.

I felt a pang of recognition.

It was very clear to me that he wasn’t able to figure out by my facial expression, my body language, my nonverbal cues, or the look in my eyes where I was coming from. So I decided to help him out in a way that I wish more people would help me out: I told why I’d asked the question.

“Honey,” I said. “I’m asking you a straightforward question to which I want a straightforward answer. I’m interested in how you see me.”

I could see he was still stuck. His neurotypical brain was saying, “I really have to finesse this somehow.” And the part of him that knows that I’m nothing if not direct was thinking, “Okay, I should just be a mensch and answer the question.”

So I helped him out again. “Really,” I said, “you must know me well enough by now to know that I don’t ask a question to which I don’t want the answer.”

He seemed relieved, and he said, “No, I don’t think you’re odd. But I do think you’re different.”

I found that helpful. The thing is, he couldn’t figure out why.

We talked more about it the next morning. He was still curious as to why I’d asked the question. Our ensuing conversation was a crystal clear example of the fact that like minds understand like minds, and that my experience of other people is very different from his experience of other people:

Bob: “Why do you want to know what I think of you?”

Me: “Because I’m interested.”

Bob: “But what does it matter? My opinion is purely subjective. It doesn’t say anything essential about you.”

Me: “Oh, okay. Let me clarify. I wasn’t asking you to tell me something essential about myself. I was asking what you thought.”

Bob: “I don’t understand that. You’re the only one who knows whether you’re odd or not!”

Me: “You’re right. Inside myself, I feel perfectly normal. After all, I’ve always been me. But I’m not always able to read how other people see me, because I don’t think like they do, and your opinion helps me imagine how another person might view me. In other words, I’m information gathering.”

Bob: “Okay. I see. That makes sense.”

Me: “I’m glad you understand now.”

Please note the sheer number of words expended to explain my state of mind and where I was coming from. He could not tell until I verbalized it.

Sound familiar? I thought so.

The way I see it, everyone has difficulty empathizing with experiences and ways of thinking that seem foreign to their own.

It’s not an impairment. It’s just called being human.

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Adventures in Self-Advocacy: Saying Thank You

January 24, 2011 Rachel Hearing, Marriage, Self-Advocacy

In the course of our trip to Maine last week, I learned the importance of expressing my appreciation to the people who provided accommodations and accessibility.

As soon as the employees at the inn began giving us quiet places to eat, I found myself looking for opportunities to let them know what an enjoyable time I was having. For instance, when we were seated in the dining room away from the other guests, I said, “Thank you! This is just what I need.” When we were seated in a quiet area for breakfast, and the waiter asked whether the situation was working for me, I said, “Absolutely. This is just perfect.” When the restaurant manager asked us whether we were enjoying our stay, I said, “People here have been very helpful in working around my sensitivities to sound. It’s made all the difference in the world. I very much appreciate it.”

Now, this course of action may sound like ordinary politeness—and perhaps it is—but I always feel myself walking a very fine line. On the one hand, I know that I have a right to inclusion. And so, I could just have sat there with a smug attitude that said, “I deserve this treatment. Why should I thank you?” And yet, it’s just not in me to act that way. Yes, we all deserve inclusion, just as we all deserve love, friendliness, and beauty in our lives, but it does no harm to say “thank you” to the people who provide them. It’s good for the soul of the receiver and for the soul of the giver.

On the other hand, saying “thank you” for accommodations can easily turn into a self-effacing apology for our needs, as though we’re getting a favor that we don’t deserve. It is all too easy to venture into the realm of “Thank you for giving me this special treatment,” or “I appreciate that you don’t mind my being such a bother,” or “It’s so nice of you not to get irritated by my request.”

No. When asking for accommodations, there is no special treatment involved. What we’re asking for is to be treated as equals. And if a person is bothered or irritated by our respectful, persistent requests to be treated as equals, I would count that as a very good thing. After all, in order for anything to change, people have to move outside their comfort zones and carve out new ones. Otherwise, they’ll never expand their ideas of what’s possible, what’s deserved, or what’s ethical.

Perhaps the best way to express appreciation for accommodations is to say, “I want to acknowledge the way you accorded me respect and provided equal treatment. You did an excellent job.” To my mind, this type of statement increases one’s dignity, and it lets the other person know that he or she hasn’t just followed the law or provided good service. The person has engaged in an ethical, potentially life-changing moment for another human being. And by showing our appreciation, we make it more likely that the person will provide accommodations to the next disabled individual who comes through the door.

The other night, my husband told me that he is planning to write a letter to the hotel manager. He wants to let her know how much he appreciates what her staff did for us. When I asked whether we should write the letter together, or whether I should be the one to write it, my husband kept pushing back with “That’s okay. I’ll write it.”

At first, I felt left out; after all, shouldn’t I be the person to follow up? But now I realize that when people make accommdations for me, they also make accommodations for my husband as an individual, and for both of us together. When my own possibilities expand, we can do more things together, and my husband’s enjoyment increases.

I think that it’s important that our loved ones express their appreciation on their own behalf, because we do not exist in isolation. How people treat us deeply affects the people who care about us. So, as much as I want to follow up with a letter myself, I’m going to let my husband have his say.

God willing, I’ll have many other opportunities to say “thank you” myself.

© 2011 by Rachel Cohen-Rottenberg

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Adventures in Self-Advocacy: Lessons Learned on Vacation

January 20, 2011 Rachel Hearing, Marriage, Self-Advocacy

My husband and I just got back from a few days in Maine, where we went to celebrate our eighth wedding anniversary. We stayed at an inn on the coast that we’d enjoyed when we were first married. The place is wonderful: great food, beautiful rooms, friendly staff, and a large common area with a fireplace. We had agreed that we should prepare to make adjustments in order to keep my auditory system happy, including eating in our room if the staff couldn’t find us a quiet place to sit in the restaurant. We figured that the whole point was to be together, and that we’d have a good time, no matter what. We hadn’t gone on vacation in years, so we were determined to have a good experience.

And we did have a fun time, but it took some doing. Ultimately, we had an even better time than I’d hoped for, and I learned a lot along the way.

When we checked in on Monday, my husband explained that I have hearing difficulties, and that we would need a quiet place to have our meals. The nice young man at the check-in desk said they would do their best—not exactly a commitment, but promising.

When we showed up for dinner, my husband explained that they needed to turn the music down if we were going to be able to be there. What he meant was “off,” but what he said was “down,” and I didn’t bother to clarify. Of course, I should have said, “In order to be here, I need you to turn the music off completely. Would you do that?” But I didn’t feel confident enough to risk an initial refusal and continue the conversation. Instead, I lapsed into the denial of “Well, it never actually works for me to converse in a place with music playing, but maybe this time, it will.” Yeah, right. That was my first mistake.

The person who seated us did not get it. She tried to get us to sit at the far end of the restaurant, away from the speakers, which didn’t help, since the room was quite small. I don’t know what she was hearing, but my ears weren’t picking up any difference in sound whatsoever. So, I said, “You’re really going to need to turn the music down in order for us to stay.” She said she would.

We waited: one minute, two minutes, three minutes. Still nothing. I was starting to max out. When she came by again, she said, “So, how is that?”

I was shocked, but still in good enough shape to say, “Did you actually turn the music down? I hadn’t noticed.” I even made eye contact—which, as you know, is a big deal for me. It’s kind of critical to do that when you’re needing to get politely in someone’s face, so I managed. When she registered what I’d said, she looked at me as though she expected me to back down. I didn’t. I just kept looking at her.

And then my husband chimed in with, “Could you please turn the music down?”

Unfortunately, that’s when the woman said, “No, that’s all I can do,” in a tone of voice that would have been more appropriately applied to the statement, “I’m so glad you’re enjoying your meal. Let me know what else I can do for you.” I’m a classically trained musician, and I can read vocal tones like no one’s business. This woman’s tone was so inappropriate to her words that it was unnerving.

My heart was steadily dropping toward my shoes, and believe me when I say that I really need to work on that response. It doesn’t help at all. And here’s where I made my second mistake: I really wanted to up the ante about the music, but all I could feel was “What’s the use?” and I let that feeling win. And for my husband’s sake, I decided to stay. So, I put my earplugs in, and doing so made the music recede quite nicely. Of course, I had trouble hearing my husband, and had to ask him to get close to my face and repeat himself a bunch of times, so it was very tiring, but I sat there because, for some strange reason, I thought I should.

Once the food was served, we were able to begin our meal. There were only two other couples in the restaurant, and they were very soft-spoken, so I rationalized that things could always be worse. Of course, in the process, I completely ignored that I was doing way too much work for what should have been a relaxing dinner.

And then, as if on cue, things got worse. The chef came out and started yacking, in a loud voice, with the man at the table next to us. I could hear him quite clearly through my earplugs—that’s how loud he was. And he went on, and on, and on. After awhile, I just started staring at him, and it wasn’t a polite stare. He made eye contact with me a couple of times, but he just kept going. I very badly wanted to say, “Could you please lower your voice? We’re trying to enjoy our meal here.” But giving into the waitress’ refusal to turn down the music had already diminished my sense of power, and I didn’t feel comfortable or centered enough to confront him. Plus, my auditory system had long since started screaming, “Why the hell are you still in this room?” I was not exactly at my best.

Failing to confront the loud chef was my third mistake. It only made me feel more disempowered.

I found myself eating my meal really fast, just to get out of there, and I left in short order. And worse, I was absolutely exhausted and miserable for the rest of the night. I was upset, I couldn’t think straight, my stomach hurt, I felt nauseous, and every muscle in my body was tense. I was wiped out.

When Bob got back to the room, we agreed to figure something else out for the next day. And we did. He went to the restaurant manager and explained the situation, and wow, did he get results! They agreed to seat us in our own little area of the restaurant, with a door that would shut out the sound from the rest of the place. When we got there the next night and found that no such arrangement had been made, my heart sank again, but when we inquired, the waitress said, “Oh, yes, we’ve had a change of plans. We’ve decided to serve everyone in the grille, and you can have the entire dining room all to yourself, without any music playing at all.”

Can you imagine? The silence was so sweet. I was in heaven. We had a wonderful meal and ended up feeling very refreshed. And the next morning, they gave us our own little dining area for breakfast, away from music and conversation.

So, when all was said and done, we had a great time. We ate delicious food. We walked on the beach in a snowstorm. We sat by the fire and read. We watched movies. And we relaxed. When Wednesday arrived, it was difficult to leave, but I felt better in my mind by the end of our time there than I’ve felt in awhile.

On the way home, we debriefed, and I realized how much I’d learned about self-advocacy from the whole experience. Here’s what I realized:

a) I have to plan ahead of time. For instance, I cannot wait until I show up at a restaurant before I explain my situation and negotiate what I need. So, before we go on our next vacation, I’m going to write a letter to the manager wherever we stay, explaining the accommodations I need, and getting agreement on what they will provide. That way, even if I show up and they don’t give me the accommodations right away, I’ve got a basis on which to argue without having to start from scratch. I can take out my letter and say, “Look, I explained the situation well in advance of coming, and you agreed to make accommodations before I ever showed up. So, how do you intend to fulfill your part of the agreement?” And I can just keep asking that question until I get what I need.

b) I cannot try to be in an environment that does not work for me. Ever. I cannot sit in a restaurant with music playing and expect to converse. I cannot filter out the sound when people nearby are talking. I cannot filter out the sound when people in another part of the room are talking and their voices are carrying. It does not work. Those days are over. I’ve been learning this lesson, over and over, in all kinds of ways. I end up in pain, pure and simple. If I’m by myself and the room isn’t too loud, blocking my hearing works more or less well. If I’m with someone else, though, blocking my ears is beside the point.

So why did I slip into denial at the restaurant in Maine? Why didn’t I ask for the music to be turned off? Why didn’t I say at the outset, “You know, I need a place away from music and conversation in order to enjoy my meal. Can you help me make that happen?” Why did I make these compromises that are so bad for my health? I wasn’t just avoiding confrontation. In the past, setting these limits has made me feel isolated and so, in order to avoid that feeling on our vacation, I put up with things that made me sick. But when the accommodations finally came through, I saw once again what was possible. I saw that I have a right to go places and enjoy myself like everyone else, without rendering myself ill, and that I can advocate for that right. My disability is not purely physical. It’s largely socially constructed, and there are ways around it.

Self-advocating doesn’t mean that every place will become accessible to me, but I increase the odds considerably by insisting on being included, and by trying to work with people to make that happen. After all, I don’t need to go out all the time. I’m on friendly terms with my solitude. But I would like to be able to go out once in a while and have it work. There are a couple of restaurants in town that seat us in quiet areas, away from ambient sound, where we can enjoy our meals. I know that it’s possible, and I need to remember that.

c) I very badly need to undo the cascade effect that begins with failing to ask for what I need, or with giving in to refusal and dismissal. Once I let go of my power and back down in one instance, it gets that much harder to find my power again when I need to stand up in another instance. It wouldn’t be so terrible if these instances were spaced days, weeks, or months apart, but when you’re dealing with sound, they can be spaced moments apart. If I give in and say, “Okay, I’ll compromise in this one instance, even though it won’t be good for me,” it’s nearly impossible for me to meet the next instance and say, “Okay, that’s enough.” Instead, I just keep backtracking, and that only makes the situation worse.

d) Being disabled makes self-advocacy a lifelong, daily necessity. I hadn’t really wanted to face this fact before, but it really hit me full force this week. I hate being confrontational face-to-face; so many of my adjustments to all of my disabilities have been along the lines of, “Don’t mind me. I’ll manage.” That just isn’t going to work anymore, because in truth, with my auditory system in the shape it’s in, taking a “don’t mind me” approach is bad for my health. It would be like acceding to pull myself by the arms down the street rather than use a wheelchair and insist on curb cuts. My auditory processing condition may be an invisible disability, but that doesn’t make it any less serious or put me in less pain.

e) Self-advocacy includes allowing others to speak up on my behalf when they are available to do so. I’ve resisted this idea, because I always feel that I should be able to do everything myself at all times, but that’s really based on an illusion.

The fact is that no one does everything alone all the time. Everyone gets help. The help is often invisible, because the world is set up for typically able-bodied people, but a great deal of the time, non-disabled people get plenty of help. As long as I don’t give my power away to the person speaking on my behalf, or allow asking for assistance to make me feel less than competent, or come to depend on someone else’s voice more than on my own, I’m okay. After all, Moses let Aaron speak for him sometimes, right?

And if no one is there to speak on my behalf, I am fully capable of finding the inner strength to do it myself. I’ve been doing it more and more as I realize my right to be fully a part of this world. Practice makes perfect, and I am seriously practicing.

f) It’s very difficult to do self-advocacy, emotionally as well as physically, so I need to reduce my worry and tension over it. I have to breathe, relax, and choose my words carefully and to best effect.

I never imagined that I’d have to do any of these things. My life is not how I’d once thought it would be, but whose life is? My life is what it is. All I can do is meet it head on, knowing that I have a right to respect and inclusion, just like everyone else.

© 2011 by Rachel Cohen-Rottenberg

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A Message of Love and Support

September 2, 2009 Rachel Belonging, Communication, Disabilities, Happiness, Marriage

This week, my 93-year-old father-in-law was joined by his 90-year-old sister in sending out love and support to Bob and to me. With her permission, I’m sharing the email that Bob’s aunt Charlotte sent to us. She lives in California and is the person whose 90th birthday party Bob missed in August.

Here is her email:

“Dear Bob and Rachel,

How I wish I lived closer to you.  I have all this warmth – so many  
hugs – and I think you could both use some right about now. I’m really  
sorry both of you missed my party. It was an interesting gathering of  
many parts of my life and you two really belonged there.

But I do understand. Reading Rachel’s blog – and some of the others as  
well – gave me new insight into the world in which people with autism  
live. I had no idea. Having learned a bit about it does help me  
understand why Bob was unable to leave at this juncture. I admire your  
plans to find other resources so that Rachel can be more comfortable  
not only if Bob is away but so that her great fear that he might not  
return and she would be without support can also be ameliorated.

For someone who had been as independent as Rachel was, this must be a  
great blow, but to give a name to the changes that have taken place  
must be a great comfort and I’m glad you have a therapist with whom  
you can work things out. I am still so very independent but the day  
will come when I can no longer drive and if THAT terrifies me so, I  
can have just a glimpse of how the world must look to Rachel.

What more to say? I love you both and wish I were nearby to do  
SOMETHING.
OOOXXXAunt Charlotte”

Since we received this message, some of the burdens I’ve been carrying have been lifted from my soul. It’s amazing what a little kindness can do, especially coming from someone who could have reacted angrily to Bob’s absence. When Bob called her to say that he wasn’t coming to California, she said, “That’s all right. The next time you visit, I’ll have more time to spend with you than would be possible at a big party.”

And now, she’s sent just the right message at just the right time. How amazing is that?

© 2009 by Rachel Cohen-Rottenberg

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Creating a Sustainable Life

August 26, 2009 Rachel Communication, Disabilities, Making Lists, Marriage, Sensory Processing Issues, Stimming

You might remember that, a few weeks back, I wrote a post called Creating a Support Network. I had written down all the tasks that I needed help doing, and Bob and I were going to cobble together a list of people who could help me do them. Over the course of the month, however, we’ve realized that while we can enlist the help of others for regular, practical tasks (such as housecleaning and carpooling), we’re going to have difficulty finding help for other, less predictable tasks:

  • If a task involves advocacy, finding someone is next to impossible; we live in a rural area, and the chances of finding someone sufficiently knowledgeable about adult autism are slim.
  • If a task needs doing only once in a while, it will be very hard to find someone to be “on call” to do it.

So, we’ve shifted gears. We have someone cleaning our house once a week, and Bob is going to take care of making sure that the carpooling goes smoothly until Ashlynne gets her license. As for the rest of the tasks, I am experimenting with ways to do them comfortably, and if I can’t find a way, the task will have to go away.

Our Strategy List
Here’s how our strategy list looked as of Sunday night:

Resolved issues

1. Housecleaning.
2. Understanding home and non-profit financials.
3. Food shopping: Rachel shops at the co-op once a week for herself and Ashlynne.
4. Banking: Rachel has begun the process of transferring funds to our local bank.

Tasks for Rachel to try on her own (limiting each attempt to one per day)

1. Going to the therapist’s office.
2. Going to the stationary store, art supplies store, and other relatively quiet places to do errands.
3. Making deposits at the bank.
4. Bringing envelopes or parcels to the post office.
5. Picking up prescriptions and other items at the pharmacy.
6. Moving more funds to our local bank.
7. Finding out what tasks she can do online.

Issues that Bob will work to resolve

1.   Getting Ashlynne where she needs to go until she gets her license.
2.   Finding people in his network of friends to pick up prescriptions, drive, or do other “spur-of-the-moment” tasks when he is ill.
3.   Making an appointment with an attorney to create Advance Directives for Healthcare for both of us.

Issues on which we will improvise

1. Cooking meals. Bob does not mind cooking meals when he is well. For times that he is ill or out of town, we will begin to create an emergency cupboard of canned soup, macaroni and cheese, herbal tea, over-the-counter medication, and other items that will allow Rachel to make simple meals and have symptom-relief medicines available.

2. Accompanying Rachel to doctor or hospital appointments and advocating for her. No one other than Bob knows Rachel’s autism well enough to be a proper advocate. When Bob can be there, he will. When he can’t, Rachel will write a letter to the doctor or hospital ahead of time, stating her needs as an autistic patient (a quiet room in which to wait, sensitivity regarding sensory issues, and so on).

3. Making telephone calls. Bob will make these when he can. When he is not available, Rachel will make them only if necessary, and only so long as she gives herself sufficient time to prepare and to recover.

Adaptive Measures
I now have three—yes, three!—Peltor noise-reduction headsets:

  • My original Peltor Optime 101 headset, with a Noise Reduction Rating of 27. I use this one at home when loud noises are coming in from the outside world.
  • My new Peltor Optime PTL (Push to Listen) headset, with a Noise Reduction Rating of 25. I use this one for working at the thrift store.
  • My even newer Peltor Ultimate 10 headset, in blue, with a Noise Reduction Rating of 30 (the highest for a Peltor headset, as far as I know). I use this one for walks and errands in the outside world.

I also have a number of “I can’t hear you” cards in my purse, explaining why I’m wearing a big headset, why I’m in the store (or bank or post office), and how I intend to pay for everything. If I’m going to become more self-sufficient, I’m going to have to continue my strategy of encountering the outside world as though I am deaf and mute.

I gotta tell ya, I’m lovin’ every minute of it. Well, almost.

People Have to Listen to Loud Music in a Pharmacy WHY?
Yesterday, I decided to try going to the local pharmacy and buying some supplies for our “emergency cupboard.” I knew that I might encounter an itty-bitty problem with LOUD MUSIC THERE, SO I WORE MY PELTOR ULTIMATE 10 HEADSET.

This pharmacy is unlike any that I have ever encountered. The number of employees and pharmacists present at any given time is almost always higher than the number of actual customers in the store. Most of the employees are behind a series of counters at the back, and they spend a great deal of their time on the telephone, taking orders for prescriptions. They all sit, stand, and move around in very close proximity to one another, all talking at the same time, all talking rather loudly, and all listening to very loud rock ‘n roll. The truly amazing thing about the people, though, is that when you come up to the counter, they are very focused, very friendly, and very helpful. Whenever I’ve gone there to fill a prescription, I’ve been so entranced by the mystery of how these people can actually work under these conditions and enjoy themselves that I forget what’s happening to my senses until I get home and stagger in the door.

So, when I set out yesterday afternoon, I knew my adventure might not last long, and as you might have surmised, it didn’t. The walk was wonderful. I could hear very little of what was going on around me. Then, I walked into the pharmacy. I was there for about five minutes, and I had put about five items into my basket, when I couldn’t stand hearing the music anymore. I felt as though someone were screaming right into my ear. Even with my headset, I felt like I was being assaulted by sound. I simply couldn’t concentrate. I finally just put my basket down and went home.

Once I had recovered from the fiasco at the pharmacy, I decided to order all the items online. I found a site that offers free delivery if your order is over a certain amount, and I got everything on my list. Then, I called my insurance company (yes, myself!) and arranged to have my regular prescriptions mailed to my house. If I need some other prescription once in a while, my husband, or my daughter, or a neighbor, or some other nice person will go and get it for me.

One task resolved. Onto the next one!

© 2009 by Rachel Cohen-Rottenberg

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Feeling Invisible

August 19, 2009 Rachel Belonging, Communication, Grieving, Loneliness, Marriage

I’ve written in the past about feeling invisible when Bob and I run into people who talk to him and ignore me. I know that this experience is not unusual for people on the spectrum, even though I don’t completely comprehend it. I know, for example, that we put out unexpected social signals (of which we’re not consciously aware) and that neuro-typical people find them confusing. I’m also aware that sometimes, because we’re not modulating the conversation with signals that others recognize, we are perceived as being socially absent.

What I can’t comprehend is how people can be so rude. So we put out weird social signals—who cares? We’re still human beings. I don’t get how people can ignore someone who clearly wants to be part of the conversation. On a purely visceral level, it offends me to the core.

Every since I was a kid, I’ve understood the necessity of inclusiveness. Perhaps I perceived my difference early on and saw the potential for being left out. Or maybe I just couldn’t stand the idea of anyone being marginalized. But it’s not just me. I’ve watched my neuro-typical daughter understand the importance of inclusiveness the same way she understands the importance of eating and sleeping. It’s not that she befriends everyone she meets, but unless people are rude or obnoxious, she will find common ground and treat them fairly. It’s not just upbringing. It’s who she is.

Unfortunately, the world is made up of people who don’t seem to get it, so I’m going through another round of feeling invisible. It began when I actually read some of the emails that Bob has gotten about my autism. Bob had told me enough about them to send me into paroxysms of grief over the weekend, but when I actually saw them, I realized that they were even worse than I’d imagined. They nearly sent me through the roof—not simply because people seemed to be working under a whole host of misconceptions, but also because they were questioning our choices and commenting on our relationship.

It was clear that we had to re-draw the sacred circle around our marriage and let people know that they’d crossed a line. So, on Sunday, Bob wrote and emailed a letter to several family members, basically setting limits while explaining how autism really works and how it affects us. He explicitly said that I feel very alone, and he ended the letter with the following statement:

“I appreciate all of your concern for me, for how I’m doing. I really do.
But please know that my part is the easier one: I am not struggling to
make sense of the neurological reality of autism. Rachel has the hard
work here. She’s doing it, and she needs your compassion and support and
empathy. If it’s hard on me, and it is, please imagine how hard it must
be for her!”

By the next morning, I’d received a very sensitive and apologetic response from one of Bob’s family members, which was truly amazing. Since then, all the other responses have been directed to Bob. Apparently, my email address has joined me in the land of invisibility. How else am I to explain its absence from the To: line? I’m sure there is a completely rational explanation, but I’m autistic and don’t really understand the mysteries of the universe as others do.

Bob forwarded one of the responses to me, and before he could forward any others, I asked him to stop. I feel unbearably sad when people direct their responses to Bob and talk about me in the third person. It’s the equivalent of standing in the grocery store and having someone direct all of the conversation to Bob when I’m standing right next to him. I’m not sure what part of “she needs your compassion and support and empathy” wasn’t clear to people, but obviously, there’s still a disconnect.

I know that many autistic people are more sensitive than your average person. Slights that another person might not even perceive cut us to the core. It’s hard for me to understand that other people don’t feel things as acutely as I do, and so it’s difficult for me when people don’t respond in the ways I need them to. But I have to step away from these kinds of conversations. Bob and I have had them for years, about so many people. Given the way my soul cries out for understanding and empathy, I’m not sure quite how to protect myself against hoping, every time, that people will just get it, but I’ve got to face facts here. I must detach my energy from people who are well intentioned but essentially blind to how I feel.

Margot Nelles, founder of the Asperger’s Society of Ontario, describes the experience of Asperger’s in the following way:

“It’s like being dropped in the middle of rural China without a guidebook or a language book,
and you go from home to home and feel that somehow you have insulted everyone.”

I’ve felt all my life that somehow, despite all my best intentions, I’ve unintentionally insulted people on a regular basis. How else can I explain being left out of so many conversations? Is my difference an affront to people? Is it my honesty? Is it my need to be understood? Or is it simply my sensitivity to all things sensory and emotional that leads people to work around me rather than directly with me? I don’t know, and I suppose, at this point, that I don’t need to know. I just need to look at empirical reality and make some course corrections about where to put my attention, my hope, and my energy.

At moments like this one, my husband says, “You just have to accept the way that people are.” But I can’t accept it. I’ll never accept it, because I know how much better it could be. At the same time, though, in my own life, I have to stop hoping for things to be different. I must stop hoping that maybe this time, if Bob and I say just the right words, with just the right tone, at just the right moment, everything will change. I have to acknowledge the stark reality that as much as I struggle with the acute sensory sensitivities that come with autism, I suffer most from other people’s responses to me, and that I can’t do a thing about it except to place my attention elsewhere and move in a different direction.

© 2009 by Rachel Cohen-Rottenberg

14 comments

Deafness and My Experience of Autism

August 12, 2009 Rachel Belonging, Communication, Community, Disabilities, Hearing, Marriage, Sensory Processing Issues, Speech, Word Pictures

First things first: I am neither deaf nor hard-of-hearing, although hearing is very hard for me. Sometimes, I wish I were deaf, but my condition often seems to be the very opposite of deafness. As I’ve said before, I hear everything at the same volume and cannot filter or prioritize sound at all. For awhile, just to get away from unforeseen auditory assaults on my system, I spent most of my time indoors.

Now, however, I am in the phase of Desperate Times Call for Adaptive (and Creative) Measures. So far, this week has been an interesting series of adventures in the land of autism, auditory processing, and the world of other people.

Sunday
My husband and I sat down with our Support Strategy List that I mentioned in my post on creating a support network. The purpose of the list is to develop a network of people I can call on to do essential tasks if Bob is ill or if he passes from this life before me. Without such a network, I’m a mass of anxiety and insecurity whenever Bob travels away from home for very long.

In the course of our discussion, we modified the list. It now has the following form:

Resolved issues:
Housecleaning (We’ve hired someone to clean the house once a week.)
Understanding home and non-profit financials. (Rachel is up to speed on this subject.)
New activity to try:
Rachel will try shopping at the co-op for herself and Ashlynne.
Remaining issues:
1. Driving Ashlynne where she needs to go until her 17th birthday (when she can drive herself). Bob will talk to the parents of one of Ashlynne’s friends to set up logistics.
2. Cooking meals.
3. Picking up prescriptions at the pharmacy.
4. Bringing envelopes or parcels to the post office.
5. Accompanying Rachel to doctor appointments or hospital procedures.
6. Getting respite assistance for #1-5 when Bob is ill.
7. Making telephone calls (to the insurance company, doctor’s office, gas company, cable company, etc.).
8. Asking a friend to have power of attorney and seeing a lawyer for the proper documents.
9. Moving bank accounts from our old town to our new town.
10. Applying for disability (?)

Our updated list is very straightforward, but on Sunday, the road to it was full of twists, turns, and potholes. Basically, I found it very difficult to choose just one task from the list and strategize on it. The more I tried to do so, the more overwhelmed I felt. After awhile, I started saying really supportive things to Bob like, “You just don’t get it!” to which he responded with equally helpful (and completely understandable) statements like, “Why are you treating me like I’m screwing up?”

After many tears, I realized that I was scared. Really, really scared. Half of my brain looked at the list and said, “No problem. These tasks are easy, and they fit on a single sheet of paper, too!”  The other half of my brain was freaking out in the worst way. I don’t like depending on other people to do things for me. It’s not just that my ego is attached to my independence. It’s also that I like routine and fear change. So, the part of my brain that was freaking out was thinking, “What if we get everything set up, and then one day, the person who helps me make phone calls moves to Tahiti, or breaks her leg, or goes to graduate school? Then, I’ll have to make phone calls (gah!) to find another stranger (gah!) to help me make phone calls (gah!), because I find it hard to make phone calls (gah!). “

You see the labyrinth in which I often get lost.

While the strategy list is helping us to create a support network, I am finding myself drawn to the tasks that I most deeply want to do on my own. And although the list has only one new activity for me to try, I later decided on two tasks that I could attempt this week: going to the bank to open an account, and going to the co-op to do a little food shopping.

Monday
In the morning, I made the five-minute walk to our local bank. Fortunately, our bank is set up in a very organized way. In most banks, when you’re looking to open an account, you have to stand around and wait to pounce on the next available account representative. I find that approach stressful. At our local bank, thank goodness, there is a very lovely woman whose only job is to find out why you have come to the bank and how she can help you. So, I told her why I was there, and she immediately brought me over to the desk of another very lovely woman, who helped me set up the account.

I had worn my beloved Peltor Optime 101 noise reduction headset when I was walking, but of course, I had to take it off in order to converse about the account. Fortunately, the bank was fairly quiet. Even more fortunately, my account representative did not feel it imperative to fill up every available silence with annoying chit-chat about the weather or her mother’s hernia operation. She stayed focused. I was pleased. All was going well.

And then, suddenly, I realized that I’d lost track of the conversation. It happens Every Single Time. Though I didn’t look at a clock, I am relatively certain that my ability to process incoming speech ended about 10 minutes after my arrival. That’s my usual window. After that, I start getting lost. It goes like this: I’m following along, doing just fine, following along some more, and then, the words being spoken just disappear into thin air, and my brain feels as though it’s in zero gravity. I try to follow the word pictures that get spelled out in my mind while the person is speaking, but I can never keep up. When I start falling behind, I hang onto some “keyword” that I can see in my head and completely miss what the person is continuing to say about it. In this case, the woman was talking about how all the accounts at the bank will soon be online and accessible from my home computer. I saw the word “computer” in my mind, and after that, the woman might as well have said, “I think your haircut is dorky,” because I could never have parsed the sentence.

Despite the usual setbacks, it was a successful trip, and on the way home, I was able to reflect on what had happened. I realized something significant: for all intents and purposes, I am like a deaf person who cannot speak. That is, I am limited in my ability to hear speech in such a way as to understand everything that people are saying, and I often cannot come up with the words with which to make a meaningful response. It’s ironic that the word “mindblindness” gets tossed around to describe autism when my experience feels much more akin to being deaf than blind. While I can’t see nonverbal cues, I can visualize perfectly well what might be going through the mind of another person; in fact, from time to time, this question becomes one of my Aspie obsessions special interests. But unless I am in a highly structured situation (like my therapist’s office) or in a very familiar environment (like my own home), I can’t process speech very well at all or speak in a truly purposeful manner to what is being said to me.

This major realization led me to the adaptive measures that I put into effect on Tuesday.

Tuesday
I went to the co-op as though I were deaf and could not speak. I wore my noise-reduction headset and left it on for the entire duration of the trip.

Up to that point, I had been making exceptions. At the thrift store, for instance, when I couldn’t hear someone, I’d take off the headset. It worked well, but I know that it’s a risk to go without ear protection, even for a minute or two. In that short space of time, I might hear a siren, or loud music, or people shouting, and then my nervous system is like a wire that won’t stop vibrating for several hours. So, I made up my mind that for my co-op trip, there would be no exceptions.

If this experiment were to work, I had to prepare. So, the night before, I typed up a card that said:

Hello—

I am wearing these ear protectors because I have a hearing disorder.
My shareholder number is 1234.
I will bag my groceries myself.
I will use my debit card with no cash back.

Thank you!

While I was at it, I typed up analogous cards for depositing a check at the bank, checking in at the clinic to see my therapist, mailing an envelope or parcel at the post office, and picking up my prescriptions at the pharmacy. If the experiment at the co-op worked, I might be able to have some success at other places in town.

The next day, before I left for the store, I emptied out the backpack I usually use when I’m outside my house and replaced it with a small bag containing my wallet and the card I’d written out. Then, I tossed a tote bag into my now-empty backpack to use for hauling the groceries home. I wrote up a grocery list for Ash and me, put on my headset, and set out on my great adventure.

When I got to the co-op, I started in the produce section, and then walked around the store, finding most of the things on my list. A few times, some people were talking loudly, and I could hear them, but not to the point of feeling jangled by it. My only anxiety was that I’d meet up with someone I knew and feel pressured to hear and to speak. Fortunately, that didn’t happen. After I’d filled up my basket, I walked over to a place near the checkout line and got out my explanatory “I can’t hear you” card, along with my debit card. Then, I picked an empty checkout line and threw myself at the mercy of fate.

The cashier I’d chosen smiled and said hello (I imagine), so I immediately put my “I can’t hear you” card on the conveyer belt and pointed to it. She nodded, read it, and then looked up and beamed a smile at me that was nearly blinding! I couldn’t believe it. At one point, as I was putting the groceries in my bags, someone came over to help, and the cashier waved the person away on my behalf. The only glitch was that I’d forgotten to put the PLU number on the tofu bag, so the cashier didn’t know which type of tofu she should charge me for. This led to her attempting to ask me how much it cost by showing me different numbers of fingers and mouthing the words. I had no idea how much it cost, but I just accepted her choice and moved on. I finally got everything paid for, put my groceries in the bags, waved goodbye, and walked home feeling about as jazzed as I’ve felt for a very, very long time.

When I got home, I was so excited that I forgot about the “coming home” part of the deal: whenever I go out into the world, I must get under my weighted blankets upon arriving home, even if I don’t see the need. I had remembered it after the trip to the bank, but after the co-op, I was practically flying around the kitchen, telling Bob all about the trip, putting the perishables into the refrigerator, and showing him what I’d bought when he said, “Aren’t you supposed to be under a couple of weighted blankets right now?”

What would I do without that man? I’d have to wear post-it notes right over my eyes.

Later that day, I sent an email to a school for the deaf in my area, explaining my situation and asking whether they might have any community support services for someone like me. This morning, I got two emails. In one, the person asked whether I wanted to sign up for a class in American Sign Language. In the other, the person congratulated me on my creative strategy for dealing with noise, directed me to a Yahoo group called DeafVermont, and asked whether I wanted to be put in touch with someone for work-related assistance. Wow! I don’t know what will come of these contacts, but it’s pretty nice to have someone write back and offer to help.

I could get used to it.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Creating a Support Network

August 3, 2009 Rachel Aging, Anxiety, Communication, Community, Disabilities, Marriage

Several months ago, my husband made plans for a ten-day trip to California. The first weekend was to be a reunion of old friends and family, followed by a trip to Yosemite with his daughter, and ending with a big celebration of his aunt’s 90th birthday. Since I don’t like flying, I don’t do groups well, and I was absent on the day they passed out the “adventure” gene, my husband was going to make the trip alone.

This plan was nothing new. Throughout our relationship, Bob has made at least one ten-day trip to California each year. As for me, I have always had a very hard time when he goes away for so long. Before I knew that I was autistic, I’d always thought I had lots of “issues” to resolve, and that I needed to “work on myself,” so that I, too, might be able to make these trips and act like a “normal” person. Even when it became clear that I wasn’t really all that interested in going, I wanted to work on handling my emotions better—both for my own peace of mind and for Bob’s ability to enjoy a guilt-free trip. So, I worked on not crying inconsolably every time he left, on getting together with friends, and on otherwise distracting myself from the fear, trembling, and massive anxiety I felt at being left on my own for ten days.

This year, everything changed. In the early part of the summer, I began to actively resist the idea of Bob going to California at all. At this point in my life, I don’t feel inclined to just “suck it up” and “work on my issues” when I have a strong feeling about something. I figure that I’m an intelligent, kind, good-hearted person and that if I’m feeling resistance, fear, sadness, or any other emotion, I should maybe, um, respect it. It’s never all that easy, because I have all kinds of conflicting emotions, which lead to all kinds of conflicting desires. As far as Bob’s trips go, I always find myself caught in the same dilemma: I want Bob to enjoy travelling, and I want him to stay here with me.

We’ve been negotiating on this trip for a couple of months. At one point, we discussed the idea of his going for a shorter period of time. A shorter trip seemed like a great solution. It seemed logical, it seemed manageable, and it seemed abundantly fair. At least, it looked that way in my mind, that part of me that likes to work out rational solutions without considering their impact on the rest of my being. In this case, while my mind was saying, “That sounds okay,” everything else in me was saying, “No, no, no. No compromise will work. Forget it.” It was a full-out, visceral feeling that I couldn’t shake. Nor could I shake the feeling of guilt at being so inflexible.

After much struggle, I finally realized why I was feeling so strongly about Bob staying here. He takes care of so many things that I can no longer do that it feels really frightening to have him be away for so long. Of course, with some advanced planning, we might have taken care of the logistical details, but it really wasn’t just the trip to California. It’s the fact that if Bob should leave the planet before I do, I have absolutely no support network set up to take care of all the things that he does. What if he went to California and didn’t come back? Where would I be?

I finally began to understand why I’d always felt like a basket case when Bob took a long trip.  Even before I knew I was autistic, even when I was still gamely trying to do everything that “normal” people do, it was clear that I did not function well when Bob was away. The autism diagnosis only brought the reality of mid-life autistic burnout into the light of day.

To make a long story short, Bob decided to cancel his trip to California this year. We’ve decided that, apart from his trips to see his dad in New York, he won’t take another long trip until we get a support strategy figured out and make sure that it works. I so much want Bob to be able to travel and have a great time with his family and friends, but we’re only at the beginning of dealing with my autism. Right now, I feel as though I’m out on the open seas without a life raft, and I can’t have my partner taking a ten-day journey to anywhere until we get a survival plan in place.

Given my love for lists, I took on the task of making a list of all the things that I need a support network to help me do:

1. Housecleaning. (This problem is solved. We’ve hired a great person who comes in once a week to clean our house.)
2.  Driving my daughter where she needs to go. (This problem will take care of itself fairly soon. When my daughter gets her driver’s license, she will also get my car.)
3. Food shopping. (My new headset might allow me to go food shopping on my own. I plan to try it in the near future, and I dearly hope that it works.)
4. Cooking meals.
5. Running outdoor errands.
6. Going to doctor, therapy, or hospital appointments.
7. Making telephone calls.
8. Advocating for myself with the health insurance company, the doctor, the cable repair person, and the rest of humanity.
9. Keeping track of the finances for our household and for a small non-profit that we run.
10. Spending time with friends.

As I looked over this list, I had some significant realizations:

1. Bob needs a respite from being my sole support person. At this point, he’s not complaining, but when he’s sick with a cold, I feel like hell asking him to do the things I can’t do. Setting up a support network will allow him to get a break when he needs one, and I won’t feel so inclined toward a meltdown when what I want to do conflicts with what I can do.

2. I supported myself for thirty years, including seven years as the sole breadwinner when my daughter was small. I kept up with every penny, wrote every check, and worked out every budget. Since Bob and I have been married, he has taken on these tasks, and it has been a great relief for me.

However, as a result, I have found myself in the dark about our income, our expenses, and all the bills that come into this house. So, yesterday, Bob and I sat down and he showed me every last bill, every last expense, every last account, and every last penny of income. I made a list of everything he showed me. Now that everything is down on paper, the whole process of keeping the house going feels more manageable to me. I know that I could take care of the finances myself if I had to. In addition, I was able to organize our financial papers so that I can find the information when I need it.

From this point on, I plan to stay more involved in our financial life. Doing so has already felt very empowering.

3. One of my all-time greatest fears is growing old alone and being put into a hospital or nursing home. Given that I have no idea how well I’ll be functioning as I age, it makes sense that I find someone who can advocate for me if I outlive Bob—someone who will have power of attorney with my best interests at heart. I can think of several friends I would entrust with the job, so I’m going to consult a lawyer about all the issues involved.

4. As much as I hesitate to enter any bureaucratic process, I am considering applying for Social Security disability. I know people who have done so (and succeeded), and the key was having a knowledgeable, supportive person involved in the process from beginning to end. Even in the best situation, the process is very onerous, but if I’m going to get assistance with basic tasks from someone other than Bob, I’d like to help pay for it.

5. I have some wonderful friends, but I avoid spending time with them because I know how easily I get overloaded. My therapist suggested that I talk to my friends about it. Since I feel completely ill-equipped to begin such a conversation, I’m going to explore the issue further with him. If I have friends that I know I can see, it will help with my fears of being left alone.

And how does my husband feel about cancelling his trip to California? Sad, disappointed, but not angry. He is starting to face the fact that the autism is real and pervasive. He’s starting to see the situation as it really is, not as we once dreamed it would be. We’ve both been crying a lot, but we’re crying together, and that makes all the difference.

© 2009 by Rachel Cohen-Rottenberg

15 comments

At a Low Point

July 9, 2009 Rachel Aging, Anxiety, Belonging, Community, Diagnosis, Loneliness, Marriage, Stimming

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg

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