Journeys with Autism » Happiness

A Strangely Ordinary Life

Rachel Cohen-Rottenberg — Wed, 28 Jul 2010 19:21:31 +0000

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

Happiness

Rachel Cohen-Rottenberg — Sun, 27 Jun 2010 15:11:56 +0000

I am happy. Why? Well, let me tell you!

I am halfway through my medication taper, and while it’s been a rough road, I am feeling better and better every day. Just the knowledge that I am getting these benzodiazepines out of my system makes me feel good. My mind is clearer, my mood is better, and I feel more resilient. The benzos were literally depressing the hell out of me. They caused me no end of problems, some of which they had originally been prescribed to treat. I’ve learned that there are thousands upon thousands of others who have discovered the same thing, and who are now working hard to say good-bye to these medications forever.

I am going out for long walks every day, whether I feel like it or not, whether it’s raining or not, whether I feel like a train wreck or not. I’ve taken my stationary bike out of my loft and stored it in the garage, because cycling indoors just symbolizes isolation to me. I have to get outside everyday and feel part of the world, and I will continue doing so even when it’s cold out. I’ve done it before, and I will do it again.

I’ve started cooking delicious, healthy meals. I can now make a great tofu curry dish and today, I’m going to make a Mexican-style meal. It’s amazing to enjoy cooking again. I’ve discovered that what overwhelmed me was not the cooking per se, but the feeling that I had to come up with a new dish every other day, instead of just building up my repertoire, one dish at a time, over a more manageable period of time. I’m still learning the concept of “slow and steady.”

I have started using the library, and it feels so calming. It sure is nice to go into a building without piped-in music.

I’m continuing to experiment with alternative communication technology, and I’m studying ASL again. I’m realizing that it’s time to get serious about giving myself alternatives to speech when I need them.

I have met some new autistic people in town! It happened in the oddest way: A local guy named Jesse emailed an ASAN board member in Oregon, looking for an ASAN chapter in Vermont. It just so happens that this ASAN board member in Oregon is also a friend of mine (Hi Elesia!), and told him that I was starting up an ASAN chapter in southern Vermont. (I had corresponded with Elesia some time ago about being the chapter leader here, but hadn’t done much to move it forward.) So, she put us in touch with each other. As it turned out, Jesse is on the spectrum, and works with autistic middle schoolers and high schoolers! He was putting together an event for Autistic Pride Day on June 18, so I showed up for that, and met some new people. Since then, he and I have been emailing and discussing all kinds of things, including ideas for getting an ASAN chapter off the ground here. He and I are both very interested in self-created autistic community and he plans to introduce me to others.

And, last but not least, I have finally remembered what I learned long ago: creating happiness is up to me. For reasons having nothing to do with me, people will not always come through, and I have to be able to maintain my self respect, my dignity, my individuality, and my sense of self. In other words, whatever happens, I have to hold onto my power and use it for my own good and for the good of others. It’s not always easy, but it’s always necessary.

It’s tough to keep learning the same things over and over, but I think that’s what we humans do. We get lost, and then we have to find the way back, again and again.

Autism, Insomnia, and Pharmaceuticals

Rachel Cohen-Rottenberg — Sun, 16 May 2010 15:51:05 +0000

Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.

Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.

When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.

Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.

I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).

As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.

Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).

I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.

Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.

Making Friends with My Eccentricity

Rachel Cohen-Rottenberg — Sun, 24 Jan 2010 22:10:18 +0000

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

My Autistic Life is Looking Up

Rachel Cohen-Rottenberg — Mon, 05 Oct 2009 17:27:15 +0000

You’ve all been so supportive of me in my grief and frustration these past few months, and it’s meant a lot to me. Perhaps I needed to bottom out a few times and cry a lot of tears in order to open up the space for better things to come into my life. I’m not sure. In any case, all kinds of very promising things have been happening for me lately, and I want to share them. While I’m doing my level best not to get attached to outcomes, I can’t help but feel very positive and excited.

Continuing Support from the Deaf Community
Karen, my contact at the school for the Deaf, continues to be an absolute gem. In every interaction, she listens to me, she thinks about solutions, she gives me thoughtful answers, and best of all, she keeps my spirits up. What’s more, she does it all by email. We haven’t even met in person yet!

As an example of what I admire about this woman, I’ll tell you how she responded when I described my auditory and visual difficulties with the ASL class. First, she said that she’d have no problem finding me an ASL tutor, but that she was concerned about the expense. She urged me to look for some kind of program that would help defray the cost, and she gave me a place to start. She also said that if I hit a snag, I should let her know, and she’d help me brainstorm further options.

Next, she suggested that I get specific information about what kind of volunteer help is needed in the school library. With my sensory sensitivities, she said, volunteering in the library might not work. As it turns out, she was right to be concerned. The library tends to be noisy and full of activity. When I told her what I’d found out, and asked whether she could suggest some other options for volunteering, her response was so insightful and so helpful that I could hardly believe my eyes:

“Oh yes I can think of volunteer opportunities for you! The challenge is finding you something where you control your own interactions with others, I think. The newsletter seems like it could be a good one because you’d be able to correspond mainly via email, control your level of input, and get to know people here at the same time. The drawback is that it’s not going to be a good bridge to you learning sign, because I can’t sign yet either. I’ll ask a couple other people for ideas too and get back to you.”

In a follow-up email, she had even more ideas for things I might do, and I’m excited about the possibilities. I won’t write about specifics at the moment; when we get something definite in place, I’ll let you all know how it’s going.

Meeting Up with Another Local Aspie
I’ve been feeling kind of sad about my relationship with my first local Aspie friend. Our sensory sensitivities and social needs are so different that it’s been difficult to figure out a way to hang out. She’s a great person, and we’ve been continuing our friendship by email, but we’re both disappointed that we haven’t come up with a strategy for spending time together.

Meanwhile, I met another Aspie woman in town who saw my article in the local paper and follows my blog. We got together this weekend, and somehow, we just clicked. The verbal pacing was right, our sensory sensitivities seem compatible, and we have some very specific interests in common. So yay! Another promising beginning.

Plans to Meet Up with Yet Another Autistic Person
In one of the many newsletters that find their way into our house, I saw a classified ad about part-time respite care for a 50-year-old, nonverbal, autistic woman. I wasn’t looking for a job, so I didn’t pay much attention to the ad, except that the words “50-year-old, nonverbal, autistic woman” kept running across my mental screen for weeks. I thought, “You know, I’d like to meet this woman. Why not respond to the ad and say so?” I wrote an email to the person who had placed the ad, explaining that I’m 51, that I’m autistic, that I navigate the world outside my home as though I’m deaf and nonverbal, and that I was hoping to make a connection with the person he’d mentioned in the ad.

Getting any response seemed like a long shot, since I really wasn’t responding to the purpose of the ad. However, I probably should have bought lottery tickets last week, because taking a long shot paid off in a big way. I got a response, and it was a very enthusiastic one, too. Apparently, the woman herself does not use the computer, but she likes hanging out with friendly people, taking walks, going to the YMCA, and so forth. She is in a shared living situation, and the fellow in whose home she resides clearly likes and respects her. Because I’m not driving anymore, he is willing to drive her up to my house when we meet. So I am very glad to have made this connection.

She and I will be spending a couple of hours together on Thursday. I am looking forward to it very much. I don’t feel any sort of anxiety about this new person, which is very unusual for me. When I meet people for the first time, I’m usually quite nervous. In this case, I suppose it’s the lack of social pressure that’s responsible for the happy sense of calm I feel. She and I aren’t going to talk with words, so I will have to find other ways to listen, to respond, and to communicate. Instead of making me nervous, the prospect sounds absolutely wonderful. It will be a challenge, but a good challenge, and something that I want to be able to do. My natural affinity is to people at the margins (no surprise there), and I’m learning to enjoy my own silence, so I’m feeling very optimistic about our time together.

So many possibilities! Good things are happening.

A Message of Love and Support

Rachel Cohen-Rottenberg — Wed, 02 Sep 2009 14:25:29 +0000

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?

Thinking Locally

Rachel Cohen-Rottenberg — Sun, 28 Jun 2009 06:00:00 +0000

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

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

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

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

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

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

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

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

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

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

Still in a Holding Pattern: Update

Rachel Cohen-Rottenberg — Thu, 25 Jun 2009 16:24:35 +0000

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.

Toward a New Sense of Belonging, Part 5: Self-Acceptance

Rachel Cohen-Rottenberg — Sun, 24 May 2009 18:19:47 +0000

Thank you all for your honest and insightful words in response to my last post. I feel so supported and appreciated. In the world of autistic people, I can finally feel comfortable being myself. I can speak from my heart, I can say what’s on my mind, and I can know that it will be okay. After a lifetime of anxiety about saying the right things and wondering whether I’ll ever be accepted by a group of people, your acceptance and appreciation of me is a great gift.

In the process of reflecting on all of your responses, I’ve come upon a new realization. If I feel at home with myself and accept myself as I am, then I can continue to feel at home with other people who experience the world as I do. The key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. As LizzieK8 pointed out so succinctly, “Accepting who you are is really the next step.”

For most of my life, the road to self-acceptance has been part of my spiritual path. I’ve done some good, useful work on this path, but I’ve never felt sufficiently grounded. In these past few days, however, my spiritual path has come down to earth and into my body. Walking that path means paying attention to the minute particulars of what I can do from day to day, understanding the work that I can’t live without, and getting a clearer sense of the kind of help and support I need.

The hardest obstacles on the path are all the negative connotations of the word autism. Like most people growing up in the larger culture, I was told long ago that autism is a scary word. The word suggests so many things that I now know to be false: that I don’t have feelings, that I’m not quite whole, that I’m “less than” everyone else, and that my family is to be admired (and pitied) for putting up with me. I know that this nonsense is all untrue, but undoing it is very hard work. Once a lie comes in and sets up house, it takes a lot of doing to root it out.

So, I’ve been looking at the internalized negative messages about my autistic traits, and I’ve started rewriting those messages. My goal is to empty them of their power to grind me down. Here are a few examples of the challenges that I’ve struggled with over the past few days, and the steps I’ve taken toward accepting who I am:

1. I cannot think clearly when other people are around, especially if I think that people are going to interrupt me.

It’s not just that I need time alone to write my blog posts. It’s that I need time alone to write a grocery list. I have a poor working memory and difficulty sequencing tasks. Both challenges are common and significant aspects of AS.

Regarding grocery lists, I have a strategy for making sure that each member of my family gets what he or she needs. I’ve made two very complete lists of all of our staples. One list is for my daughter’s food preferences, and the other list includes the edibles that my husband and I like to have around. I take the lists, look around the kitchen, see what we need, and write it down. Even by myself, it’s difficult not to get distracted by a hundred other things, but if someone else is in the room, it’s like running a sensory obstacle course. As Saja put it, “It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.”

In the past, I’ve figured that I was just plain stupid, hopelessly broken, extremely lazy, or not working hard enough on my therapy. Now, I realize that I have a Pervasive Developmental Disorder, otherwise known as a high-functioning form of autism called Asperger’s Syndrome. Doesn’t that sound ever so much better?! Don’t I feel just wonderful now?! The negative connotations of all these words send up some very uplifting and useful thoughts: Not me. I’m smart. I’m not one of those people.

Well, I reply, I am smart, and those people are my people, thank you very much. My people show care and concern when one of us feels like she’s sinking. My people use their minds to try and figure out solutions to the problems we share. My people say things so straightforwardly that it shocks the less autistically wired. My people are not broken, not crazy, not heartless, and not stupid. My people are…just like me.

So…where was I? Oh, right, the grocery list. When I was writing down the grocery list this Friday, my husband started to ask me about something. I was tempted to try and think about two things at once, because, after all, I’m smart. But I didn’t. Instead, I had the presence of mind to say, in a very straightforward and friendly voice, “I can’t answer a question and do the food list at the same time.”

Simple. No judgment. Just a statement about what’s true. And my husband’s response was, “Oh, right, I forgot.”

What a relief. The more I can articulate what’s going on in a neutral way, the better I do at accepting it as a part of me.

2. I have developed a complete aversion to sweeping the floors and cleaning the bathrooms.

I’ve been doing these tasks all my adult life, and it’s been making me progressively more irritable, grouchy, and generally unpleasant. I thought I was just lazy and immature.

I’m not. Having an AS and an SPD diagnosis, I finally understand the core of the problem. It’s called severe gravitational insecurity. That’s what my OT calls it, and she has a license and everything. The problem is that when I start to move my head through space, I can’t tell where the ground is, so I don’t have a feeling of stability. Moving my head anywhere except in a line with the rest of my body is extremely disorienting.

Sweeping means that I have to bend down to look under the bed. It entails moving furniture and bending over to see what’s behind it. Cleaning the bathroom means bending down into the tub. No wonder I get grouchy and irritable. It’s my nervous system’s way of defending itself. It’s as though my nervous system is saying, ”Um, whoa, excuse me, please don’t do that thing you do with your head in mid-air and a sponge in your hand.”

So, given that my nervous system and I are trying to be friends, I’m about to do something I said I would never do: I am going to find someone to clean my house.

Trust me, this is big. I grew up in a neighborhood in which many people hired housekeepers, and my mother was very proud of the fact that she cleaned her own house. I’ve inherited that pride, and I’ve become a reverse snob about it. But I really have to let go on this one. My husband did the cleaning on Friday, but that just can’t go on indefinitely. He’s 64 and perfectly healthy, but he’s not getting any younger, and I don’t want him shouldering all these responsibilities. Since I’m dealing with an actual, real-life disability, we need to start getting used to the idea that we need assistance. We need to start calling in support now.

3. I’m about at my wit’s end with auditory overload.

I feel so crowded and so overstimulated by sound that my nervous system is regularly going haywire. It happens everywhere outside my house, especially now that people are spending more time outdoors. And at the store, there is a music speaker directly above the jewelry case where I work. At first, I’m rockin’ to the music, but pretty soon, it’s enough to make me weep.

So, given my acceptance of the fact is that I’m autistic and that sound is really hard for me, I’m considering wearing earplugs when I’m out in the world. Yes, earplugs. This weird sister just got a little weirder. I’ll still be able to hear enough to know whether someone wants to speak to me, and if they do, I’ll take out one of the earplugs and listen. I mean, what’s worse—someone thinking I’m odd, or my head feeling like it’s going to explode? Gee, let me see…

I’ll let you know how it goes.

4. I feel really awful and very insufficient when my husband picks up the slack for me.

Luckily, I’m beginning to realize why. Read carefully, because it’s weird: I actually think, and I am not lying, that basic tasks are as difficult for him as they are for me.

Of course, they aren’t. He has his limits, but going to the grocery store and chatting it up with people is fun for him. And he likes cooking, too.

So why do I share Saja’s experience of having such a loving, sensitive, supportive husband that it makes me want to weep? It’s because I’m used to driving myself relentlessly in my quest to be “normal,” all the while denying how much work it takes to navigate through the sensory world. Over the course of my life, I haven’t been as loving, or as sensitive, or as supportive toward myself as I’d like to think.

And then, one day, out of the clear blue sky, my husband comes along and says, “I love you just as you are, and I can help you take care of things,” and it just doesn’t compute. At all. Fortunately, I’m learning that it doesn’t have to compute. I just have to stand there and accept that my husband is actually speaking the truth.

After all, as one reader said to me, neuro-typical people who love, respect, and support their Aspie spouses and children have the same difficulties with belonging as we do. Because families with autistic people are so different from what most people consider normative, our neuro-typical loved ones are left standing apart in the larger world. They support us in ways that ordinary people can’t fathom. They have patience about things that other people consider impossible—like having a spouse or a child who has meltdowns. They try to understand our challenges, they know how hard we work every day, and in the best of times, they don’t expect us to be “normal.” Lots of them don’t even think that something called “normal” exists. And so, they don’t fit squarely in the NT camp, and they don’t fit squarely in the AS camp, either.

But I always feel that they are an integral part of who we are. They’ve freely consented to come with us on this journey. They’ve thrown in their lot with us. They belong here, too.

Photo Friday

Rachel Cohen-Rottenberg — Fri, 15 May 2009 17:07:48 +0000

No, I’m not going to title this post Photo Phriday, lest the god of linguistics smite me where I stand.

To end the week, I’m posting one of my favorite photos. It’s one of Bob and me on our wedding day. I look so happy that it always raises my spirits to look at this picture. Hope it raises yours as well!

Have a great weekend, everyone!