Journeys with Autism

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

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

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

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

Me: “Why am I getting so agitated?”

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

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

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

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

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

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

My nervous system: ”What question?”

Me: “What’s wrong with other people?”

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

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

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

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

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

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

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

Me: “What argument?”

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

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

My nervous system: “Apology accepted.”

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

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

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

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

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

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

Me: “Why are you shouting at me?”

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

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

My nervous system: “Me, too.”

Me: “Friends?”

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

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

© 2009 by Rachel Cohen-Rottenberg

In an October, 2007 article, Henry Markram, Tania Rinaldi, and Kamila Markram of the Brain Mind Institute, Ecole Polytechnique Fédérale de Lausanne (EPFL), Switzerland, posit a new theory about how the brains of autistic people work. They refer to autism as Intense World Syndrome, turning widely accepted thinking about autism on its head.

I recently stumbled across this article, so I thought I’d share some of its insights. While I dislike some of the authors’ attitudes toward autism and autistic people, their theory seems to reflect many of the ways in which we describe our own experiences.

I’ll get the negative aspects of the article out of the way first, and then we can look at the positive things the authors have to say.

Problems with the Article
1. There is the usual garbage about how we suffer from a horrendous disease. For example, the article begins with the following words: “Autism is a devastating neurodevelopmental disorder…”

They’re lucky I’m tenacious and hopelessly optimistic. And autistic and hyper-focused. Otherwise, I’d have stopped right there.

2. The authors show a stunning lack of knowledge about how autistic people learn and develop over the course of our lives. For example, the authors state, “Autism is now recognized as a neurodevelopmental disorder manifesting within the first 3 years after birth and progressively worsening in the course of life.”

I guess I’m lucky I can still write. I’d better get going on the rest of this post before I lose any more brain function.

3. The authors make the blithe assumption that autism can (and should) be cured.

They first posit that autism is a disorder in which the “normal unfolding of the genome can be sabotaged by an epigenetic attack.” An epigenetic attack is one that causes a genetic change without affecting the underlying DNA sequence. The authors speculate on possible causes of such an attack, such as environmental toxins.

But never fear. There’s hope for us mutants yet. The authors continue: “Understanding the ultimate cause of autism lies in understanding the nature of the epigenetic attack and developing the ultimate cure for autism lies in being able to prevent this attack and reverse its effects once it has occurred.”

So someday, someone may try to turn me into a normal person. Good luck.

4. They come to their conclusions based mainly on research using lab rats. (I’m not defending the rights of lab rats. I’m pretty warm and fuzzy toward most animals, but as far as I’m concerned, rats are on their own.) My issue is that they use rats to arrive at conclusions that they could also arrive at by talking to autistic people.

If I didn’t mind flying, being away from home, or going on sensory overload, I’d probably spend some time outside one of these labs with a sign reading:

TO THE NEURO-TYPICAL DOCTORS:
FORGET ABOUT THE RATS.
THERE IS AN AUTISTIC PERSON OUTSIDE.
SHE WILL TALK TO YOU FOR FREE.
JUST USE YOUR WORDS, AND YOU WILL FIND TRUTH.

Okay, so much for the problems. Let’s get to the good stuff.

Definition of Intense World Syndrome
The authors lay out their hypothesis in this way:

“Based on the recent multi-screening results obtained on the valproic acid (VPA) rat model of autism, we propose here a unifying hypothesis of autism where the core neurophysiological pathology is excessive neuronal information processing and storage in local circuits of the brain, which gives rise to hyper-functioning of the brain regions most affected. Such hyper-functioning in different brain regions is proposed to cause hyper-perception, hyper-attention, and hyper-memory that could potentially explain the full spectrum of symptoms in autism.”

Neurons process and transmit information by electrochemical signals in the brain. Sensory neurons respond to visual, auditory, tactile, and other stimuli. So, according to these scientists, autistic people do an excessive amount of sensory processing. We experience the sensory world more intensely than other people, we attend to details in a more focused way than other people, and we store information (that interests us) far longer than other people.

Makes sense to me.

They continue: “We propose that a common molecular syndrome is activated in autism that produces hyper-functioning in a coordinated manner by forming hyper-reactive and hyper-plastic microcircuits in different brain areas.” As far as I can tell, they are positing that the autistic brain reacts more strongly to sensory stimuli than a neuro-typical brain (thus, the “hyper-reactive” microcircuits), and rearranges the connections between its neurons more often than a neuro-typical brain (thus, the “hyper-plastic” microcircuits).

The researchers then suggest that our hyper-reactive and hyper-plastic microcircuits cause us difficulty in integrating sensory stimuli. Thus, we tend to focus intensely on one part of the sensory world, and we have difficulty shifting our attention:

“This core hyper-functioning pathology is proposed to cause the spectrum of autistic symptoms by rendering local neural circuits hyper-sensitive to novel and past stimulation, and once activated, these microcircuits could become autonomous, difficult to control and coordinate with the activity in other microcircuits. Hyper-reactivity and hyper-plasticity are therefore proposed to cause exaggerated perception to fragments of a sensory world that are normally holistically correlated…and furthermore to cause hyper-focusing on fragments of the sensory world with exaggerated and persistent attention. Such hyper-attention could become difficult to shift to new stimuli…The positive consequences are exceptional capabilities for specific tasks while the negative consequences are a rapid lock down of behavioral routines to a minute fraction of possibilities, which are then repeated excessively.”

The authors also discuss their finding that autistic people may have a hyper-reactive amygdala, the part of the brain that processes memory and emotion. Because the amygdala is hyper-reactive, they believe, we do not let go of fear memories in the same way as neuro-typical people. We therefore perseverate as a way to calm and channel our anxiety.

Having concluded that our brains are highly sensitive, the authors assert: “In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome.”

I think that’s right.

Now for the fun part: upending the accepted theories.

Poor Executive Function Theory
The term executive function refers to a person’s ability to disengage from his or her current environment in order to act upon a model of behavior in the mind or a series of future goals. Because autistic people tend to have poor executive function and a preference for sameness and routine, researchers had assumed that this deficit derived from hypo-functioning of the pre-frontal lobes.

However, the Intense World Syndrome theory posits that poor executive function derives from hyper-functionality of the brain’s circuits, causing an autistic person to attend to, remember, and focus on particular pieces of information, especially stimuli in one’s current environment.

Theory of Mind (ToM) and Mind-Blindness
Just because it’s so wonderful to hear someone else say these things, I’ll let the researchers speak for themselves:

“Autistic people are thought to be severely impaired in empathising with other people and ‘reading their mind,’ which is captured in the ‘theory of mind’ or ‘mind-blindness’ theory of autism… The proposed deficits in reading other people’s feelings and thoughts and the lack in empathising with other people has been commonly used to explain the impairments in social interactions and communication as well as inappropriate responses in social encounters…

We…propose that the autistic person may perceive his surroundings not only as overwhelmingly intense due to hyper-reactivity of primary sensory areas, but also as aversive and highly stressful due to a hyper-reactive amygdala, which also makes quick and powerful fear associations with usually neutral stimuli. The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

I think they’re onto us now.

The Hypo-Functioning Amygdala Theory
I’ll let the authors speak for themselves again:

“The current version of the amygdala theory of autism assumes a hypo-functional amygdala, which leads to lack or inappropriateness of social behavior in autism. In this view, autists fail to assign emotional significance to their environment and for this reason are not interested in others, do not attend to faces, and fail to engage in normal social interaction…[W]e propose that this view may be not correct and that quite to the contrary, the amygdala in the autistic individual may be hyper-reactive which leads to rapid excessive responses to socio-emotional stimuli. In this view, the autistic person would be overwhelmed with emotional significance and salience. As a consequence, the subject would want to avoid this emotional overload and would have to withdraw from situations, such as social encounters, which are rich in complex stimuli.”

Amazing, isn’t it? I keep reading this paragraph over and over, just to make sure it’s real.

The “Autistic Person Is Missing Some Puzzle Pieces” Theory
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

In Closing
I found my way to the Intense World Syndrome theory by way of a great article by Maia Szalavitz. The article discusses Intense World Syndrome and contains some very good information about autism and empathy. 

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

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.

© 2009 by Rachel Cohen-Rottenberg

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

In The Complete Guide to Asperger’s Syndrome, Tony Attwood defines executive function as a term that includes the following skills:

• Organizational and planning abilities
• Working memory
• Inhibition and impulse control
• Self-reflection and self-monitoring
• Time management and prioritizing
• Understanding complex or abstract concepts
• Using new strategies

Attwood goes on to say that most people with Asperger’s Syndrome have some level of executive-function impairment (Attwood, 234).

At one time or another, I have found most executive-function skills to be a challenge. At present, my difficulties tend to be in the areas of working memory, organization and planning, and time management. 

Making lists has always been my strategy for coping with these executive-function deficits. Over the course of my life, my lists and I have had a rocky relationship. Sometimes, I labor over them lovingly. At other times, I declare my independence of them entirely. Ultimately, I always come home to them with an odd mixture of desperation and limitless hope. It’s only now, at the half-century mark of my life, that my lists and I have settled down to a mutually agreeable existence.

Working memory

My fears about my poor working memory have always been with me, but as a child, I could not consciously express them. Instead, I made lists that reflected just how frightened I felt about forgetting people, places, and things.

The first lists I can remember contained identifying information about photographs I took in 1970 and 1971, when I was twelve and thirteen years old. I still have these photographs. Every single one has the following information on the back:

• The full name of each person in the photo
• The address, city, state, and zip code of each person in the photo
• The age of each person in the photo
• The date the photo was taken
• The location in which the photo was taken

I can vividly remember my state of mind when I was documenting this information. I felt as though I were doing a rote homework assignment in a thorough and conscientious way. I concentrated on my handwriting so that it was consistent across photos. All the information being there, every time, no matter how redundant (and it was quite redundant) was absolutely crucial. These lists calmed me and helped me to feel safe.

The people in the photos are generally my parents, my brother, and myself—not people whose names, addresses, and ages I’d be likely to forget. I now see this odd ritual as an expression of my fears about my working memory—that is, about my tendency to forget my thoughts very quickly. That I was afraid of forgetting the names and addresses of my parents and brother when I was still a child indicates just how deep my fears went.

Organization and planning

Up until recently, I believed that my organizational abilities were quite advanced. And, in some ways, they are. For example, if I am faced with a chaotic array of objects (like an overstuffed attic or a floor covered with toys), I can easily see the categories into which the objects fit, and I have no problem putting them in order.

For several years, I worked a full-time job as a technical writer out of my home office, and along with my former husband, I homeschooled my daughter. In those years, my life was a triumph of strategic planning. I had a schedule that showed what time to begin and end work, when to get exercise, when to homeschool, when to take my daughter to her flute lesson, what books we’d taken out of the library, and when we needed to bring them back. I had lists of the writing projects I was working on, along with milestones, deadlines, and meeting times. I had sublists showing the tasks I still needed to complete for each project. Along the way, I was making more lists. I was planning curricula (with accompanying book lists) and documenting each day’s homeschooling activities (in a list with subheadings) for the school district.

I’m sure you will be thrilled to learn that I consistently got everything done on time. My lists were flawless. The superintendent of schools was amazed. My co-workers thought I was super-human. So did I. Of course, I was irritable, overwhelmed, anxious, and exhausted most of the time, but since everything was moving along so well, what did it matter?

In the light of my Asperger’s diagnosis, I can now see that I was able to organize and plan the daylights out of myself, but I had no sense of what was appropriate to plan for. I never took into consideration my feelings, my energy level, my stress, or my health. My present husband recently pointed out that I was like the Road-Runner, speeding along, right off a cliff. Remember Road-Runner? Everything was fine, so long as he never looked down. The minute he did, he plummeted to earth.

Something like that has happened to me in the past six years. I got divorced and remarried, and along the way, I quit my job and decided to devote myself simply to being a homeschooling mom. Once my daughter began going to school, I saw how helpless I felt without a work schedule or a homeschooling list. As I’ve let go of the things I used to do so efficiently, I’ve begun to see just how much all that efficiency was masking significant deficits.

Time management

My most serious executive-function deficit is my inability to manage time. For me, this problem is related to having a poor working memory. I often forget to do the simplest tasks. I now have a series of lists that help me get through the day so that I take proper care of myself and meet my responsibilities to my family.

I began making these lists when I was a child. When I was in the seventh grade, I wrote down what to do in the morning before school. The list was handwritten and quite specific, with the proper time for doing each activity, such as brushing my teeth and putting my books in my bag.

I was very embarrassed about having this list, and I never showed it to anyone. I felt like a silly child who had to be told the simplest things. Over the years, I’ve continued to make lists, all the while feeling ashamed that I had to write down the tasks that other people had learned to do effortlessly decades before.

Since my diagnosis, I have learned that because I have a sensory processing difficulty, I need reminders of what to do, and in what order to do them. Learning the proper sequence of tasks has been a challenge.

My lists no longer have the hour and minute at which I must do something. That level of specificity made me feel like a prisoner; ultimately, I would rebel and throw the list away entirely. The logic of my current lists came mostly by trial and error (which is why the lists are in pencil). But now I have lists in which I have a great deal of confidence.

Here is my morning list:

AM

• Stretching and situps
• Put on sweater and hat
• Floss and brush teeth
• Comb hair
• Use deodorant
• Use hand cream
• Get dressed for working out
• Set out warm pajamas for tonight
• Make bed
• Give cat food and water
• Rinse tofu
• Have fiber powder in juice, water, vitamins, etc.
• Have breakfast (cereal, fruit, soymilk) and do dishes
• Walk or bike
• Dress for the day
• Put out workout clothes for tomorrow
• Turn on cellphone

The morning list was easier to put together than the evening list. It may be my difficulty with transitions. The morning transition is the easiest one: I’m just waking up. As the day goes on, the activities I want to do start to compete with the tasks I need to do. Once I get started on something, my hyper-focus can take over and make the transition to a new task very difficult. I’ve now succeeded, however, in putting together a workable evening list.

The great thing for me about having these lists is that if I get off-track because something else has grabbed my attention, I have a way of getting back to the basic things that need doing. Having a visual reminder of what to do is enormously comforting. All that anxiety about forgetting what to do has diminished. For the first time, my life has a rhythm that comes from within and a pace that makes sense.

© 2009 by Rachel Cohen-Rottenberg