Archive for Meltdowns

Welcome to the Back of the Bus

August 30, 2009 Rachel Belonging, Communication, Empathy, Grieving, Meltdowns, Myths about Autism, Spectrum Pride

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

  • Does Rachel have as much empathy for you as you have for her?
  • Often, it’s the caretaker who suffers more than the patient.
  • You should put Rachel first, but not at the exclusion of your own children.
  • If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 2009 by Rachel Cohen-Rottenberg

8 comments

Letting Go and Starting Over

June 1, 2009 Rachel Autism-Literate Therapists, Eye Contact, Marriage, Meltdowns, Occupational Therapy, Parenting, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Spectrum Pride, Volunteer Work

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

13 comments

The Words I Most Needed to Hear

May 11, 2009 Rachel Anxiety, Disabilities, Gravitational Insecurity, Happiness, Making Lists, Marriage, Meltdowns, Parenting, Sensory Processing Issues, Women and AS

Some momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think? ;-)

© 2009 by Rachel Cohen-Rottenberg

11 comments

Every Aspie is a Working Aspie

May 6, 2009 Rachel Disabilities, Making Art, Making Lists, Marriage, Meltdowns, Occupational Therapy, Sensory Processing Issues

On any given day, venturing outside the walls of my house feels akin to entering a sensory minefield.

Of all the things that feel difficult, driving my car keeps rising to the top of the list. I’ve had a lot of resistance to driving for some time now, which is difficult when your teenager goes to school an hour away.

My daughter has a friend nearby who goes to the same school, so our two families share the driving. My husband does our share of the driving, and the other parents do the rest. Occasionally, my husband is out of town when my daughter is with me. At those times, I am perfectly capable of getting up at 6:00 am, getting in the car by 6:45 am, getting my daughter to the bus stop by 7:15 am, and then driving home.

Perfectly capable. It all goes swimmingly. The problem is that I cannot do this routine every day. When I have to do it, I do a lot of advance planning to clear my schedule for the rest of the day. If I can’t clear my schedule, and I have to do something else in the world, the next day I’m pretty exhausted. I stay home, and if I’m lucky, I might remember to drink enough water.

For some reason, driving feels especially daunting. It must be all the attention that I have to give to so many things at once: other cars, stoplights, pedestrians, work crews, construction vehicles, and road signs. I simply must read all the road signs. Every. Single. One. Then, of course, there are all the various stores, and advertisements, and strip malls, and signs with print and flashy graphics by the side of the road. Of course, I simply must read all of the print I see flying toward me, even though I will never go to MacDonald’s or to my local Chevy dealer. When I think about driving, the sensory minefield image becomes especially vivid.

Now, it’s true that I drive an hour for my OT appointment, but that feels very different. I know that when I get there, I can relax my attention completely. My OT has set everything up so that life doesn’t feel like a sensory minefield. She even asks me how the drive felt. She doesn’t ask whether there was a lot of traffic, or whether I knew which exit to use. She asks how the drive felt. It’s a minor miracle, really.

The drive home is pretty good, too, because I’ve just spent an hour with someone who understands how much work it takes for me to do any of the following:

1. Drive
2. Plan a sequence of apparently simple tasks
3. Transition from one apparently simple task to another
4. Walk through a grocery store
5. Figure out how to put my shoes on without feeling dizzy
6. Keep up with a conversation between two people
7. Keep up with a conversation that involves more than two people
8. Be in a crowd in which people are talking loudly and/or all at once
9. Handle sudden or persistent noises
10. Keep track of visual stimuli, whether moving or stationary

She also understands that the following are not optional or a waste of time, but activities absolutely essential to my neurological health:

1. Walking or bicycling
2. Making lists
3. Singing and moving
4. Stretching
5. Doing my OT exercises
6. Touching soft fabrics
7. Watching spinning things
8. Writing
9. Resting under 30 pounds of weighted blankets
10. Doing physical labor (the more strenuous, the better)
11. Having a routine
12. Doing art work
13. Stimming
14. Having a good night’s sleep

The husband also understands all of these things. He’s amazing. Today, for example, he asked me whether I could take the car in for inspection, because he has a cold. He didn’t say, “You do it, honey. I’m sick.” He said, “I don’t want to do it, but I realize that if you do, it means dealing with the outside world.” He understands that I need a fair amount of lead time to prepare, and that I will need a great deal of recovery time when I get back.

I felt pretty goddamned awful about having to say no today, but it wasn’t because he was putting any pressure on me. It was because I had to say the words: “I have a disability, and I can’t do these things on the spur of the moment. We need to start thinking about getting some assistance from other people when you’re not feeling well.” It was so hard to say those words. I went outside, dug up some more grass (yes, we still have some, but not for long…) and felt really sad. On the positive side, however, saying those words helped lead me in precisely the opposite direction from a meltdown. Not bad for one lifetime.

I used to be able to do everything. Really. You must believe me. Everything. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work at a demanding job, teach my kid, support my family, pay the bills, cook, clean, plan birthday parties, include all the neighborhood kids in our Jewish holiday celebrations, plant a garden, exercise, and do just about anything anyone asked me to do, except stand on my head. But, as LizzieK8 said so beautifully in her comments to Monday’s post:

“We’ve spent so much of our life using up our energy to pass for normal, that we just don’t have the reserves for full-time passing anymore. We can do it when we have to (if given enough time to prepare), and we know better how to take care of ourselves when we’ve had to overextend our reserves, but we just don’t have it any more to do a full-time job, day in and day out.”

I burned a lot of energy in 50 years trying to be “normal.” I tried to do everything I thought the world demanded of me, and I did it with a very sensory-sensitive neurology, undiagnosed AS, SPD, dyspraxia, and who knows what else.

But those times are over. I’m sad that they’re over. And I’m also unbelievably relieved.

I’m finally learning that a human being is not an infinitely renewable resource. We have to take care of ourselves and use our energy wisely. For Aspies, just walking through the world and taking care of ourselves is a lot of work. For those of us who are feeling the effects of a lifetime of defying the way we were made, taking care of ourselves is the most vitally important work we can do.

© 2009 by Rachel Cohen-Rottenberg

13 comments

Meltdowns and Otherness

April 7, 2009 Rachel Loneliness, Marriage, Meltdowns, Perseveration, Social Gatherings

I started to hit a wall today while doing the Passover preparations.

My husband and I sat down on Sunday and made a list of everything we needed to do. (I know, a list! Aren’t you surprised?) We wrote down what I could do, what he could do, and what we could do together. It seemed like a pretty realistic list, and things have been getting done.

Today, I began to have trouble seeing how everything could possibly get done by tomorrow night. My husband’s basic approach is that we should do everything we can while enjoying the process. Whatever gets done is fine. It’s a good approach, except that I’m an Aspie, and I started perseverating on how I could possibly sweep and mop the floors and get all the Passover plates switched with the regular plates before tomorrow night. I started to get teary and agitated. All of my husband’s reassurances fell by the wayside. I felt like I was moving toward a meltdown. I haven’t had one since my diagnosis, and I really didn’t want to have one today.

So I decided to go to my volunteer job for a couple of hours, just to get out of the house, get some perspective, and have something of a routine in the midst of all the doings. I was glad I did. I got to work on some jewelry for two hours, which is like a zen meditation in a corner of the store. I wasn’t feeling great, but I got to focus on something other than the object of my worries, and that was good.

Afterward, I stayed around the store for a little while and began to realize how “other” I felt. I feel “other” pretty much all of the time. The AS diagnosis has only confirmed that I haven’t been hallucinating all these years. And then I realized why getting ready for Passover has been feeling so impossible.

Of course I can sweep and mop the floors. Of course I can switch the plates. It’s not about that. It was never about that.

It’s about having people to my house and feeling my otherness. It’s about knowing that I can’t possibly keep up with the conversation. It’s about knowing that I’m going to get overloaded. It’s about knowing that I can’t just show up in a group of people and have it be easy. For all the years that I’ve been having Passover seders, for all the years that I’ve been having gatherings of any kind, the feeling is always the same. The moment people arrive, my heart drops to the floor, because I feel so completely and ridiculously insufficient. The minute the doorbell rings, I’m about to fall behind the pack, and I feel it. I’ve always felt it.

It’s hard to think about being “other,” so I worry about the floors and the plates instead, as though they are amulets that will assure me a sense of belonging, a sense of being understood, a sense of being one of many.

My meltdowns stem, in part, from this feeling of otherness and from my fruitless attempts to erase it by working harder and harder, hoping that this time, if I work hard and get it “right,” everything will be okay and I won’t feel so alone. Of course, I work so hard and ignore my needs so completely that I get a migraine, or have a meltdown, or both.

Why are migraines and meltdowns preferable to feeling alone? Because feeling alone makes me want to cry. And why are stomping around and getting angry and having a meltdown preferable to crying? It’s the adrenalin rush. When I have a meltdown, I’m on a roll. I’m the most intelligent, the most insightful, and the most unfairly treated human being on the face of the earth, and I’ve got the adrenalin rush to prove it.

When I’m crying, none of that happens. I have to admit powerlessness and sadness and all that stuff. Who needs it? That’s much harder.

Every year at Passover, Jewish people don’t just tell the story of the exodus from Egypt. We relive it. The point is to liberate ourselves from the narrow places that constrict and enslave us. I feel like I’m in that narrow place of having done the same thing over and over, year after year, working harder and harder, trying desperately to be “normal,” all to no avail. Sometimes, it feels so easy to be this weird person who enjoys solitude, and it all feels okay. But there’s the flip side, where I stand apart and my solitude is transformed into loneliness, even in the midst of people who love me.

The only way out is to embrace the otherness, to fully accept it and to feel everything that comes with it. I hope I can start to do that.

It’s an incredible blessing to be able to write about all these feelings and know that at least one other person out there will understand. One other person is infinitely more than none. It makes the otherness all right, because we share it. Perhaps that’s the way out, to know that we are other, to know that we are alone, and to know that we are together in that experience.

May everyone be renewed in this season of renewal, whatever path you walk.

© 2009 by Rachel Cohen-Rottenberg

12 comments

Do You Remember Your Childhood Meltdowns?

March 25, 2009 Rachel Childhood, Girls and AS, Meltdowns

[Note: This post talks about the physical and emotional abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, you might want to skip this post.]

Lately, I’ve been reading a number of blogs written by moms of Aspie kids. At some point, each mom describes her child’s meltdowns, and asks for guidance and support. The girls’ meltdowns sound every bit as spectacular as the boys’ meltdowns—a fact that interests me a great deal, because I don’t remember having any meltdowns as a child.

Except maybe one. Or, at least, the beginning of one.

I was four years old and the flower girl at my uncle’s wedding. I was all dressed up and sitting in an empty room with pine wood floors. In front of me was a photographer who was getting ready to take my picture. To my right were a number of relatives, including some aunts and uncles, who started making baby talk and saying “Smile!” as the photographer picked up his camera. I decided, right then and there, that I would not have my picture taken. So, when the photographer pointed his camera at me, I started screaming. I really didn’t know why I was screaming, and I still don’t know why. It just felt like the right thing to do. When the photographer put the camera down, I stopped screaming. Then, when one of the relatives in the wings told him to try again, he’d pick up his camera, and I’d resume screaming where I’d left off. After several attempts, lots more annoying baby talk from my relatives, and lots more screaming from me, the photographer finally gave up.

Fast forward to the wedding reception. There I was, between my mother and my father, and the photographer thought he’d pull a fast one on me and take my picture. I caught him at it, though, and I started yelling my head off. The next thing I knew, my father yanked me by the arm down to the basement, where he started dragging me with one hand while he hit me, over and over, with the other. Everything became a total blur. At one point, an elderly man tried to stop the abuse, but he failed. I have a vivid memory of my ankles burning against the floor. I must have been completely overwhelmed, because I don’t remember how it all ended. I just remember coming back upstairs and feeling very ashamed and very ghostly.

There were many other incidents of this kind of behavior from my father. Often, my mother would set it up by concocting some reason that I’d pissed her off that afternoon. She’d then torture me for hours by telling me what my father would do when he got home. I was so afraid of the pain that I once tried to bribe her by spilling out the contents of my piggy bank on her bed—an attempt at self-protection that only infuriated her. By the time my father got home, I was actually relieved that the suspense was over.

So, here’s the question I’ve been turning around in my mind: Is it possible to hold back a childhood meltdown out of fear? It certainly seems so. When I was about ten years old, I remember walking upstairs in our house and realizing that I wanted to start screaming. I held it all inside me, though, because I didn’t want to get hurt. I remember thinking about it quite clearly.

Apart from the screaming episode at the wedding, I didn’t melt down again until I was out of my parents’ house, 3000 miles away, and in my first serious (and tumultuous) relationship. Then, I made up for lost time and had a series of absolutely stellar meltdowns. The best I can say for them is that they resulted in getting me into therapy, which was a blessing straight from heaven. Therapy didn’t just save my life. It enabled me to create a life worth saving.

But what happened during all those years of sensory overload, with my mother’s screaming and crying, and my father’s hitting and shouting? For one thing, I dissociated from my feelings almost entirely. Except for sadness and fear, I don’t remember having any feelings. Dissociation is very common with trauma, so that doesn’t surprise me.

But I did more than dissociate. I imploded. The meltdowns, which should have been on the outside, took place on the inside. I held everything in—all my fear, all my sensory overload, all my confusion, all my frustration, all my loneliness, and all my anger. But it didn’t stay inside and dissipate. It just wore me down and exhausted me with no possibility of catharsis. By my sophomore year of college, I was unable to read a single page of a book and remember what it said. When I tried to write my papers, the script was jagged because my hand was shaking.

That’s when I fled to the west coast. My first adult meltdown about four years later was an unbelievable relief. I felt as though I’d waited for it all my life. Which I had.

Whenever I read about parents of Aspies being concerned about handling their children’s meltdowns in the best possible way, I feel an incredible rush of love and appreciation for those parents. I’m not sure they know how well they’re doing. They seem to wonder whether they are being good parents. I wish I could get them all together and shout, “You are spectacular parents!”

And now, a question for other Aspie trauma survivors: Do any of you remember only a very few childhood meltdowns, or none at all? I’m wondering how common this scenario is.

If you’ve read this far, thanks for coming along with me.

© 2009 by Rachel Cohen-Rottenberg

17 comments

Thank You All So Much!

March 22, 2009 Rachel Anxiety, Communication, Meltdowns

Hey there, cyber pals:

I appreciate all of your comments about my recent visit to the doctor. Your observations have given me so much to mull over.

Ben, you make a great point about meltdowns being partially fuelled by the anxiety of having to face the same situation again. In fact, when I was talking with my husband about the doctor’s visit, I said, “I don’t ever want to go back there again.” It’s generally my first response to getting overwhelmed. The part that really gets me moving in the direction of a meltdown is the idea of having to face the situation again alone. I have a very difficult time asking for help from another person or saying that I can’t do something on my own. The Aspie aloneness, the sense of being apart, has accustomed me to thinking in terms of going everything alone.

John, I’m also the person who shows up at the party right on time and stands by the dip, eating things I shouldn’t. Perhaps you’ve seen me there? I also relate to your resistance to asking for help around the disabling aspects of Asperger’s. Many of us older Aspies have lived in sink-or-swim mode for so long, trying so hard to do everything right, that it goes against years of conditioning to let go and say, “I have a disability and need some reasonable assistance.” I’ve spent so much of my life trying to hide it all and act “normal” that simply coming out and asking for what I need feels distinctly like turning a barge.

Stat Mama, you’re right: if the situation becomes so overwhelming that everything in me says, “Okay, I’m out of here,” I should respect my instinct to flee. I often get stymied because I look at everyone else in a situation and wonder why I can’t handle things as well as they do. On Wednesday, I looked around the waiting room and here’s what I saw: an older woman making cute conversation with the children playing on the floor; the children’s mother reading a magazine; the person next to me sitting with his eyes closed; another older woman reading a magazine; and an elderly lady smiling at the children as they sent their germs in her direction. I’m looking at all of these people, who seem to be handling the situation like adults, and I want to jump to my feet and say, “Hello? Does anyone else value their time on this planet sufficiently to be really upset at waiting for an hour, or am I the only one—as usual?!?!” It would be good to remember that the impulse to do so is my nervous system defending itself and does not reflect upon my level of maturity or otherwise excellent manners.

LizzieK8, thanks for telling me about your experience bringing an advocate to the doctor’s office. It strengthens me in my resolve to bring an ally to potentially overwhelming situations.

Erin, I really appreciate knowing that you feel as I do about the kind of rudeness and disrespect I encountered, and that it’s not just an Aspie thing. And you’re right: these things happen because people don’t say anything about them. I definitely need to put my foot down. The question I’ve been wrestling with is “How to do it?”

Being a writer, I’m very partial to putting my feelings on paper. My husband is less than enthusiastic about this idea. He is afraid that a letter might get read days, weeks, or even months before the actual appointment and then get forgotten. He makes a good point.

My husband’s idea is that he should talk with someone in the office, either in person or on the phone, about what I need. Then, on the day of the appointment, he’ll call again, remind them of what I need, and ask whether they’re running behind. If they are, he’ll let them know what time we’ll be there for the appointment.

This morning, I realized that each of us can handle the situation in our own way. We can also simplify the entire process by asserting one basic fact: I am an autistic person. People might not understand what Asperger’s Syndrome is, or what Sensory Processing Disorder is, or why sitting in a crowded waiting room is beyond the pale for me, but everyone has heard the word “autistic.” They may not correctly understand what it means to be autistic, but the word will get their attention. Once we have their attention, the rest will follow. So, I’m going to write a (hopefully) short letter to be attached to the front of my file, and my husband will begin his conversations with the office staff using the words, “My wife is autistic and needs…”

After 50 years of overload and 20 years of migraines, it’s time to assert who I am and ask for the help I need.

© 2009 by Rachel Cohen-Rottenberg

2 comments

Aspies, Doctors, and Advocating for Ourselves

March 20, 2009 Rachel Communication, Doctors, Meltdowns

I had a very frustrating experience at the doctor’s office on Wednesday. It taught me a lot about my Asperger’s challenges, my limits, and the necessity of getting the right support.

But first, I need to vent.

Since moving up to Vermont, I’ve been seeing a new doctor. I went to her office on Wednesday because I had requested a referral to my OT, and the doctor wanted to check in each month about my OT visits. We also needed to do some “housekeeping” tasks, like figuring out when I had my last physical.

When I saw her last month, my chart did not have any information in it from my last doctor. I’d requested that the records be transferred about five months before, and it was surprising that they weren’t there. I later got a very apologetic message from the office manager, saying that the records had arrived long ago, but had not been placed into the folder with my new patient information.

Unfortunately, that mistake was a harbinger of things to come.

On Wednesday, I had a 3:00 PM appointment. I showed up about 10 minutes early to check in and give the receptionist my co-pay. I then sat in the waiting room, which was slowly filling with people, until 3:20, 3:30, 3:40…You see where this is going. At some point, a woman with two small children came in. The older boy was coughing constantly, and the younger one (who undoubtedly was carrying his older brother’s germs) was crawling around putting everything in his mouth that wasn’t tacked down, and touching every object he could find, including the walker of an elderly woman who was there to see the doctor. The mother of the two boys sat with a magazine held up to her face (literally) and paid very little attention to the children.

By about 3:45, I was long since overwhelmed and had begun to realize it. So, I went up to the receptionist and asked whether there was a quiet place in which I could wait. Luckily, a room had just opened up, so the nurse brought me in there and took my blood pressure, my pulse, and my temperature. When she was done, she said that the doctor would be there “in a few minutes.” I began to enjoy the solitude until I realized that it would be more than a few minutes, at which I point, I started to silently cry with frustration and anger. At 4:10, the doctor walked in, and without offering an apology or an explanation for the long wait, said: “So, you’re here for an osteopathy appointment?”

I just about spit. It was everything I could do to keep from rolling my eyes and snarling. Instead, I used my best humorless monotone voice to say, “No, I’m here because I’m seeing an OT and you said I needed to come in once a month.”

“Oh,” she said. “That’s right.” (Did I mention that she had the seven-page OT evaluation I’d brought in a month before?)

Then, we spent about ten minutes talking about health insurance, during which time she told me that I needed to call the insurance company and find out whether the referral had been approved. She suggested that I carve out about 45 minutes and put my phone on speaker while I got the run-around. Again, in my most humorless voice, I said, “No, I absolutely cannot do that.” She finally said she’d get someone from the office to call the insurance company.

Terrific. So, about scheduling that physical, I said. I couldn’t remember exactly when I’d had my physical last year, so I asked her to look it up on my chart. She said, “Well, I see you had a physical in 2007.”

“Okay,” I said slowly, “in what month did I have my physical in 2008?”

She said she’d have to figure that out. So then, and I am not kidding you, she began to remove the pages from my chart and spread them out onto the examination table. She still couldn’t find the pages from 2008, so she said, “I’ve got to go and get someone on the case about this.” She left the room. I know, I should have grabbed onto her ankles and kept her from leaving, but I figured she would be back in a minute or two. Why I made that assumption, given how swimmingly everything was going, I don’t know. Anyway, the minutes ticked by. First, I started crying again, and then I walked out into the corridor, just to make sure everyone hadn’t gone home. I couldn’t decide whether to just walk out of the office altogether. I probably should have.

Finally, after ten minutes, she came back and told me that I’d had my last physical in June of 2008. Halle-freakin’-luyah.

Then, she gave me some new prescriptions for my medications. Did she ask me anything about my visit to the OT? Anything at all? Nope. And that was the reason for the whole visit. I could have gotten my prescriptions called in and found out the date of my last physical over the phone.

I drove home crying in utter frustration.

So what have I learned about my Asperger’s from this little disaster?

1. As the saga in the doctor’s office wore on, I could see a meltdown on the horizon, and I steered myself away from it. Nothing would have been gained by it, and I wasn’t about to lose my dignity in front of everyone. However, steering clear of the meltdown was so exhausting that it left me without a clear sense of how to express my frustration and my needs in a constructive way. Instead, it took a huge effort just to ask the simplest questions, and by the time we were done, I could hardly put a sentence together.

2. I don’t do well when my expectations are thwarted. I generally expect some wait at a doctor’s office, but I had not imagined a 70-minute wait for what should have been a 15-minute appointment. That was more out-of-whackedness than I was prepared for.

3. I don’t do well when people are very late after I’ve done everything I can to show up on time. I’ve gotten more flexible about some lateness, but over an hour is really over the top.

4. I don’t do well when people don’t apologize. A simple, “So sorry about the long wait, but we’ve had a series of mishaps today” would have sufficed. But then again, I’m an Aspie and don’t understand social graces. I guess I’ll have to work a little harder on that.

5. I can’t sit in a crowded waiting room for very long.

After telling the story to my husband, he said, “Look, you’re dealing with a disability here, and they need to make accommodations for you. Otherwise, you can’t go to that doctor’s office again. If you had a mobility problem, they’d make allowances, so what’s the difference?” (A smart man, my husband.)

So we’re going to write a letter to the doctor’s office, making it clear that my AS and SPD make certain things very difficult. We want to be able to call before coming in, so that if they’re running late, we can wait at home, rather than in a crowded waiting room. If they can’t accommodate us, we’ll find someone who can.

I realize that what I need most in these situations is an advocate, rather in the same way that an Aspie kid in school needs an aide. So my husband will go with me to future appointments. He won’t be overwhelmed, and he’ll have enough clarity of thought to express what I can’t express while I’m just trying to process what’s going on.

My next appointment isn’t until June, so we have some time to continue thinking it over. I’m not going to accept that what happened is so common that I should let it go. I know it happens a lot, but that doesn’t mean I shouldn’t protest it and advocate for what I need. Nothing will change otherwise. Nothing ever changes without people making themselves heard.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Reflections on Being an Aspie Parent

March 16, 2009 Rachel Childhood, Communication, Marriage, Meltdowns, Parenting, Women and AS

000_0298I sometimes hear my fellow Aspies say that they are afraid to have children. Some fear being cold, remote, and unfeeling parents. Others are comfortable with the idea of raising a child with an ASD, but feel apprehensive about parenting a neuro-typical child.

Certainly, there are challenges related to having Asperger’s and raising children. I won’t deny it. But we Aspies bring incredible strengths to the process as well. No Aspie should disqualify himself or herself from parenthood simply on the basis of an Asperger’s diagnosis. My daughter Ashlynne is neuro-typical, and I wouldn’t trade being her mom for anything in this world. The past 16 years have been the best years of my life.

Our Aspie Challenges

1. Confronting family history

To me, dealing with one’s childhood issues is a must for any parent. Having a troubled childhood is tough on anyone, and it can have an even greater impact on an Aspie. Having an Aspie parent who is difficult can also put an Aspie child off the idea of parenthood altogether.

My father was an undiagnosed Aspie. He could be very fun or very distant, very supportive or very condeming, very loving or very frightening, depending on the day and time. I identified strongly with my father’s sensory defensiveness and confusion about how to interact with other people, but I swore that I would do everything differently when I became a parent. It was many years before I realized that my father’s Aspieness was separate from the things he had done. We were both Aspies, but we had choices about how we treated our children. He made his choices. I made very different ones.

While no one ever works out every life issue completely, I’m glad that I recognized and began working with mine before becoming a parent.

2. Meltdowns

Most Aspies have them. They’re not fun for anyone. How to handle them when you’re parenting is a big challenge.

I didn’t know I was an Aspie when Ashlynne was small, so I felt very, very guilty about my meltdowns. I thought that they were reflective of some terrible character flaw and that I needed to work harder in therapy. Now that I’m diagnosed, I feel much less likely to have a meltdown. I know what causes one, I can read the warning signs, and I know how to speak my feelings before they consume me.

Looking back, I can see that I mitigated the effects of the meltdowns by a) making sure Ashlynne wasn’t present during them, or b) taking special care to tell her that the meltdown was not her fault.

Has it worked? Certainly. One night, when I was in serious self-abasement mode, my husband said, “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

Every child has challenges in life, whether that child has an Aspie parent or not. I have watched apparently neuro-typical parents do far, far worse things than have a meltdown. Ask me sometime and I’ll try to describe what they did without resorting to every curse word I know.

3. Inability to do fun kid things in crowds

When Ashlynne was small, I braved the wilds of Chuckee Cheese and insanely chaotic birthday parties. After awhile, though, I realized that I ended up with a migraine or a case of exhaustion. So, we worked it out for her neuro-typical dad and step-dad to do the crowd stuff while I did the more quiet stuff. For a number of years, I have not entered any of the following places: a mall, an ice skating rink, a roller-skating rink, a party, a downtown New Year’s celebration, the 4th of July fireworks, or a first-run movie.

Before I knew about AS, I felt awful about not being able to do activities in crowds. I kicked myself over and over because I was not the fun parent. I thought I was lazy and let my husband do all the work. Now that I’m diagnosed, I have been liberated from these kinds of distortions. These days, I just say to my daughter, “I’m afraid I can’t take you to the mall, honey. You know those places aren’t for me.”

Her response is usually, “Yeah, mom. It’s not like I haven’t noticed.”

If I were married to a crowd-aversive Aspie and had the same neuro-typical daughter, I would enlist the help of other parents. Some parents love driving and being in crowds. Really! It’s amazing. There are other things I can do, and working out an exchange of skills to keep a balance with other parents would not be difficult.

4. Hyperfocus and special interests

Most Aspies are capable of high levels of focus when it comes to our special interests and projects. I am no exception. When Ashlynne was born, I had to make the shift from having lots of time to do whatever I wanted to being on call 24 hours a day. Most parents find this transition a daunting one. I certainly did. I can very clearly remember organizing boxes of memorabilia, and then reorganizing them, and then reorganizing them some more, just to get back a sense of control.

The good news is that once you get into the swing of things, you can start including the child in the things you enjoy. I remember thinking that my life would really take off when I had Ashlynne, because I could include her in my activities. And that’s exactly what I did. I’ve always loved to go for long walks, so I did, with Ashlynne in her stroller. I love picture books, and lo and behold, so did she! As she got older, I could homeschool her and learn new things every day. I could share music and art with her. I could teach her to read and share my joy in it. I could shop with her at thrift stores. I could help her carry the pounds of books she took out of the library each week. There was no end to the interesting things we could do together.

Our Aspie Strengths

1. Ability to verbalize

Over the past 30 years or so, the phrase “use your words” has become a staple of parenting. If your child is screaming, you say, “Use your words and tell me what’s wrong.” If your child is hitting someone, you say, “Don’t hit. Use your words instead.” If your child is pouting, you say, “I’ll be happy to listen to you if you use your words.”

And what do we Aspies use in our interactions with other people? Words! Lots of words! We don’t read nonverbals very well, and we don’t use them to regulate social interactions. Words are our life rafts in a sea of social confusion.

Personally, I consider words holy. So, I have always used them to express what I’m feeling or thinking, and I have always asked Ashlynne to verbalize her emotions and thoughts in return. Her dad and step-dad are also verbal people, so she’s had plenty of good role models. As a result, she has always been able to articulate her thoughts and feelings.

2. Ability to create structure

Not all Aspies are good at structuring things, but those of us who have the structuring gene provide a great service to our children (so long as we don’t overdo it). Kids need structure, and they feel very secure when they have it. Our Aspie need for routine can play a very positive role in the life of a child, so long as we take everyone’s needs and interests into consideration. It’s an opportunity to work creatively with your partner and child so that everyone can get what they need and keep a modicum of sanity. It’s not always easy, but it’s very satisfying when it works.

My ability to create structure allowed me to homeschool for eight years. I loved it. I created a curriculum every year, made lists of books under each subject header, and kept a daily homeschooling journal for the school district. One of the reasons I enjoyed homeschooling so much was that I got to spend time with my daughter in a structured way while being creative with the learning process. 

3. Honesty and directness

Our Aspie capacity for being honest and straightforward can work wonders for a child. I grew up in a family with a mom who was, to put it mildly, a very unreliable narrator. It was intensely confusing for me to try and figure out how things really stood. I still catch myself stating something that my mother said as fact, and then having to remind myself that the story may not be true.

Fortunately, children of Aspie parents do not tend to have this problem. If anything, they may have the opposite problem: thoughts and feelings stated so bluntly as to be hurtful. It is very important to frame honest feelings so that a child can receive them in the most constructive way. I am very conscious about how I say what I need to say to my daughter at any given time. Sometimes, bluntness is the best policy, especially with a teenager. Sometimes, it’s the worst choice. When it’s your child, you know what works and what won’t.

4. A passion for justice

I’ve always had a heart for justice. It’s a wonderful and painful gift. If you insist on fairness, having a child is a crash course in how completely maddening the world is. Kids regularly come up against the insensitivity of adults who think that children accrue human rights over a period of years, rather than having been born with them.

Enter the Aspie parent, who feels compelled to educate such people. Does it work? Usually not. I have written so many eloquent, well-considered, solution-oriented letters to people who weren’t capable of understanding a word I said. I wish I’d saved those letters. I’d compile them into a book called “If I Have to Explain Why, You Wouldn’t Understand” (with a shout-out to Harley-Davidson, who made the T-shirt with that slogan on it).

So, maybe you can’t change other people, but you can give your child a code of ethics that is sorely lacking in many kids. When we were homeschooling, Ashlynne and I would do lots of role playing about making ethical decisions—about not following the crowd to do wrong, about being inclusive, and honest, and keeping your word, and all the things that seem to be going out of style. She loved coming up with different ways to address ethical dilemmas, and the lessons have stayed with her.

5. Acceptance of non-conformity

If you’re an Aspie, you’ve always been in the minority. You’ve had to deal with being different, with being the odd one out, with being out-of-step much of the time. As painful as these experiences are, they’re very valuable for a parent. I entered parenting with an acceptance of a fairly wide range of behavior and outlook. As a result, lots of kids congregated at our house because they felt safe there.

In conclusion
Our children don’t expect us to be perfect. They’re looking for integrity, and they want us to make our best effort on their behalf. They’re nowhere near as hard on us as we are on ourselves.

So if you’re an Aspie, and you’re considering parenthood, don’t count yourself out. It’s a great adventure.

© 2009 by Rachel Cohen-Rottenberg

30 comments

Sensory Self-Defense

January 29, 2009 Rachel Marriage, Meltdowns, Occupational Therapy, Sensory Processing Issues

I learned something from my occupational therapist about sensory defensiveness that has proved very helpful.

Last week, before I went in for my appointment, my OT called to get some background information. At one point in the call, she asked me which senses get highly overloaded. I told her that I have a lot of trouble with visual and auditory stimuli, and that I also find light touch very difficult. For example, when my husband comes over to me while I’m writing and gently kisses me on the head, I feel like I want to execute a self-defense block and shout “Stop!” It’s the light touch combined with the fact that I also happen to be using another sense at the time that puts me over the top.

In describing the feelings of anger that rise inside me, I told my OT that I used to say to myself, “Girl, where is this anger coming from? You’ve got a lot of issues.” But now, I realize that it’s just my nervous system that can’t handle light touch or too much sensory input at once.

She very emphatically agreed, saying, “Yes, that’s right. It’s not psychological. It’s your nervous system defending itself.”

My nervous system defending itself.

Wow. That’s exactly right.

This morning, I had an experience in which, for the first time, I was able to watch this process and see the way it works. I was sitting down to breakfast and pouring water out of a Brita pitcher into a glass. I hadn’t realized that my husband had just filled the top of the pitcher with water, and that the water hadn’t gone through the filter yet. So, when I went to pour the water into the glass, all the unfiltered water in the top of the pitcher spilled all over the table.

I jumped backward, uttered an expletive, and got very upset. I found myself about to go upstairs and get angry at my husband, when I stopped and looked at what had happened. I’d been so startled by seeing the water spill unexpectedly, and by getting cold water on myself, that my nervous system was completely agitated. I thought, “Wow, I get it. This anger is just my nervous system defending itself.”

After cleaning up the spill, I walked upstairs and decided to talk with my husband about it. I said, “Honey, I think perhaps my nonverbal cue of leaving the top off the Brita pitcher when I first pour water in wasn’t direct enough. So, could you start leaving the top off the pitcher when the water hasn’t gone through the filter yet?  Or maybe leave the top on sideways, as a signal? I just spilled the water all over the table.” So we talked about it a bit and came up with some strategies, and that was very nice.

But I was still quite agitated. I was flapping my hands all over the place and lifting myself up and down on the balls of my feet. Before I left the room, I realized that I didn’t want my husband to think I was agitated because of him. So I said, “I want you to understand. I’m not angry at you at all. It may sound like it, but that’s because my nervous system is in overdrive. It’s not your fault. It’s just going to take a little while for me to wind down.” And then I went back to the kitchen and had breakfast.

What a change! In the past, a moment like that would have triggered an angry outburst. If it had happened when I was already overloaded and at my wit’s end, it might have turned into a meltdown.

So now I know that when I feel myself get angry over these small things, it’s no one’s fault. It’s just my nervous system defending itself.  I can just watch the feeling and listen to what it’s telling me. In this case, my nervous system was saying, “Hey! That was really unexpected, wet, cold, and messy. Please, clean up the spill, get me warm, and try to avoid this particular mishap again, because I really, really don’t like it.”

Imagine. If every Aspie in the world could verbalize that experience, and if other people could understand what it means. What a different experience of life that would be for everyone!

© 2009 by Rachel Cohen-Rottenberg

15 comments
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