Monthly Archives: October 2012

Aspergers Marriage

Lessons from an Aspergers-NT Marriage (Part 2)

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This is the 2nd part of a 4 part series about the lessons my husband (NT) and I (aspie) have learned during the 25 years we’ve been married.

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Accept that aspies have good days and bad days.

I try hard to keep some of my more annoying aspie traits under control, but there are times when symptoms that I thought I had a handle on suddenly resurface or worsen. This tends to happen when I’m stressed or anxious.

A few weeks ago, an unplanned four-hour wait at the DMV triggered a bout of perseverative thinking. Even though I was aware of it, it was difficult to stop going over and over the situation in my head and, worse, out loud. It wasn’t like I wanted to keep recalculating our potential wait time based on the rate of customers being served times the number of people ahead of us factoring in the bizarre DMV numbering system that involved six different letter prefixes plus the periodic return to the queue of skipped numbers. It wasn’t that I was enjoying obsessing over each clerk who disappeared on break, thereby lengthening our wait time, or repeatedly pointing out how arbitrary the list of required identity documents was. I just couldn’t stop myself from doing it, even though I was aware of what was happening and aware of how my perseveration was making a stressful situation worse for both of us.

Anxiety or sensory overload can aggravate a wide variety of Asperger’s symptoms. When I’m stressed I find that I’m more clumsy, less open to being touched, more rigid in my thinking, less willing to deviate from routine, more vulnerable to perseverate thinking, more prone to tunnel vision, and more likely to struggle with auditory processing. Symptoms that don’t normally interfere with my functioning can become a big obstacle. I know it’s frustrating for my husband to find himself in a stressful situation and then have to deal with an outbreak of my aspie traits on top of everything else. These are the moments that really test our marriage and I’m still working on finding ways to make them less awful for both of us.

Try to balance the aspie partner’s touch sensitivities with the NT partner’s need for physical affection

Touching, one of the most important and fundamental aspects of an intimate relationship, can be uncomfortable for people with Asperger’s. Although I’ve made a lot of progress in this area, there are still times when I shrink away from being touched.

Certain types of touching in particular–light touches and those that come at unexpected times–are more likely to be uncomfortable. When I’m intensely engaged in an activity, being touched often registers as an unwanted distraction rather than spontaneous affection. I’m also more likely to pull away from touch when I’m stressed or anxious.

Then there are the times when my brain is so busy trying to figure out where a certain type of touch is headed that it’s hard to simply relax and enjoy the moment. Because aspies don’t get many of the nonverbal cues involved in intimate relationships, we rely heavily on the intellectual side of our brains to process how an intimate moment is going to proceed. Yeah, that’s about as romantic as it sounds.

All of this can be very hard on an NT partner who naturally craves physical affection. Although it’s hard to change how I feel about being touched at the “wrong” time, I try to compensate by initiating physical contact that I’m comfortable with at a time that’s good for me.

Author Liane Holliday Willey once took a lot of heat for including holding her husband’s hand five times a day on her “to-do” list. Putting handholding on a to-do list may sound cold and mechanical but that doesn’t mean that the action itself has to be mechanical. Since I’ve begun consciously looking for opportunities to initiate small touches during the day, I find that being physically affectionate has become more of a natural instinct for me and that feels good.

Accept that the NT partner may need to compensate for the aspie partner’s social skills deficits at times.

No matter how hard I work at improving my social skills, I still regularly miss nonverbal cues, resulting in everything from confused looks and awkward pauses to downright hostility from other people.

Here’s a recent example from when The Scientist and I met with a saleswoman about a new apartment:

Saleswoman to The Scientist  (who she’d met previously): “It’s good to see you again.”
The Scientist : “It’s good to see you, too.”
Saleswoman to me: “I’m Linda. It’s nice to meet you. Have a seat.”
Me (shaking her offered hand then sitting down): “Thanks, it’s nice to meet you too.”
{awkward pause}
The Scientist : “Oh, Linda, I don’t think you met my wife.”

I had no idea what was causing the awkward pause until The Scientist jumped in and offered my name to the saleswoman. What threw me was this: The Scientist had already met Linda and didn’t introduce himself. I must have been subconsciously modeling his behavior so I didn’t introduce myself either.

This sounds like a minor hiccup in the conversation but it happens frequently and it unsettles people. As an aspie–and an adult–it can be hard to accept that you need this type of help from your partner. Again, get over it. We all have skills that come naturally and social skills aren’t on the list of natural talents for aspies.

This is an area where practice can help. If the NT partner is willing, you can try roleplaying or talking through how unfamiliar events might play out. However, both partners need to understand that while aspies can work at improving social skills, it’s unlikely that they’ll achieve the sort of social proficiency that comes naturally to NTs.

Having to frequently repair social errors is hard on the NT partner and will probably continue to be an issue throughout your partnership. Acceptance can go a long way in situations where change is slow and inconsistent.

—–

In part 3: Compromise, communication aspie-style and understanding triggers

Communication

Writing is Communication Too

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If you get a group of writers together, on the internet or in a workshop, someone will eventually ask the ultimate navel-gazing question: why do we write?

My stock answer–the one that’s easiest to explain and makes me look least weird–is that I write because I enjoy it. There’s nothing like the rush of chasing an idea, my fingers flying across the keyboard, barely able to keep pace with my thoughts. There’s no other activity I can get so completely lost in.

That answer saves me from having to reveal this: I write to set the words in my head free.

My brain latches onto interesting ideas in a way that makes it hard to stop thinking about them. Once something grabs my attention, my mind will turn it around and around, shaping and growing it like a vase on a potter’s wheel. Writing the idea down stops the rapid spinning of the wheel and leaves me with the equivalent of a finished vase I can share with other people instead of a hard lump of clay sitting in my brain.

Shaping an idea in my head feels like this:

Ultimately, I write because I need to. I communicate better through written words than spoken words. When I write, I can take as much time as I like to shape my thoughts into a coherent whole. I can get feedback from others to check for clarity. I can let an idea breathe and grow over days or weeks.

The process is something like this: Write. Revise. Reconsider. Delete. Edit. Clarify. Rethink. Shape. Walk away. Come back. Write more. Think more. Print it. Read it. Share it. Revise, revise, revise. Done. Mmm, maybe just change that word. Or this one. Okay, really done. Yeah? Yeah.

Doing this in a spoken conversation is impossible. There’s no delete button for spoken words. Revising, in the form of explanations and clarifications, is rarely successful. Once you say something, it’s out there in a way that is, ironically, indelible.

Communication Deficit or Communication Difference

So do I have a communication deficit? (one of the core diagnostic criteria for Asperger’s)

That may depend on how we define communication. You could argue that writing is a one-way process. I carefully shape my idea and put it out there, feeling quite content with how it looks and feels, and then I go on my merry way, chasing another bright shiny idea.

It’s all very neat and tidy. It’s also very autistic. What could be more characteristic of an aspie than a one-way information dump followed by a determined retreat back inside my head to ponder the mysteries of the universe, or at least the mystery of why someone keeps leaving sandwiches on the sidewalk of one particular street where I walk my dog?

But, short of a mind meld, writing is my best shot at sharing what I want to say. I could talk all day and not get across half of what I can communicate in writing. Since I’ve started blogging, I’ve shared things with my family–in writing–that we’ve never talked about. Big important things and little niggling things, all of them left unspoken, sometimes for many years.

The result has been anything but one-way. Sharing my thoughts in writing creates an opening for others to start conversations, to ask questions, to offer insights and to share their own thoughts. This is communication–deep, fulfilling, nontraditional communication–in a way that I’ve rarely experienced.

It feels so good to share something with my husband and see a light of understanding in his eyes. It’s done wonders for our relationship to revisit past hurts and misunderstandings in a fresh light. There’s a new level of understanding opening up and I think it’s because I’m finally able to communicate, really communicate, how I experience and process the world around me.

I’ve also discovered that writing is a way to communicate with myself. The process of exploring Asperger’s is helping me integrate disparate parts of myself into a whole. It’s creating a map of my inner landscape in a way that is profoundly healing and empowering.

Perhaps this is what I meant when I said I write because I need to. Writing connects me to those around me, and it connects me to myself.

Once a Writer, Always a Writer

This is one the first things I ever wrote, when I was seven. I remember hearing my mother telling parts of this election day story to someone and deciding that I wanted to make it into a book. I still have it, in all its stained, stapled glory, and thought it would be fun to share.

If you look closely enough at these pages, you’ll see my aspie traits shining through. Note the atrocious handwriting.
Aspie trait #2: oddly advanced vocabulary and syntax for a 7-year-old (quite puzzled, indeed)
I have a feeling a lot of this writing is actually echolalia (the repetition of another person’s words, which is common to kids with ASD) and I was mimicking my mother’s telling of the story to another adult.
More aspie traits: a pedantic approach to social situations and a rigid adherence to the rules (going out the “in” door! *gasp*). I was also a pretty funny little kid, no?
Emotions

The Angry Aspie Explains It All

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The emotion I see most routinely associated with autism is anger. Again and again–on Facebook, discussion forums, blogs–I see pleas from parents for suggestions about handling anger outbursts in their autistic children. Adult ASD forums are an outlet for more direct expressions of anger–at friends, acquaintances, family, classmates, colleagues, strangers and the world in general.

We autistics are apparently an angry bunch. And it’s no wonder. As children, the world comes at us with an intensity that is confusing, frustrating and, yes, aggravating. Add to that years of miscommunication, bullying, rejection and being misunderstood and it’s not surprising to see the  “angry autistic” has become a deeply entrenched stereotype.

Yet when I sat down to make my anger constellation, I only got as far as rage and frustration before I was stumped. While anger has been a familiar companion over the years, it’s one that I’ve relegated to the shadows.

I created my happiness constellation unprompted, a nice little sketch on a small, clean notebook page. My anger constellation required a thesaurus and a good hour of hard thought to produce this:

The brainstorming notes for anger constellation

I’m including that page of notes here not because I expect anyone to read it but because it’s a good visual representation of how I experience anger–a chaotic, fractured and sometimes incoherent mess. I’ve spent days avoiding writing this next part, the part where I have to untangle the mess.

Anger makes me uncomfortable. I avoid it. I suppress it. The last thing I want to do is talk about it. Expressing anger feels wrong. Bad.

So first, a reminder:

And a word about the words I’ve chosen. They feel arbitrary. I’ve done the best I can to put names to the different ways anger manifests for me but even after much thought I’m still not sure they’re the most appropriate choices.

Frustration first, since it’s the first word that came to mind and one of the easiest to describe. Frustration is unmet expectations. It’s waking up to an ice storm on a day I’d planned to run. It’s spending far too long struggling to open a package of cookies and then tearing the package down the middle. It’s not remembering how to switch from the DVD player to cable and getting 500 channels of static. Frustration makes me grit my teeth and growl when what I should be doing is identifying my needs and articulating or acting on them. Serial frustration sometimes leads to a shutdown or a meltdown.

Annoyance. I’ve written and deleted more descriptions of this one than I can count. Which in itself is annoying. Annoyance is a disruption of my process or state of mind. I can’t find the right word to finish a sentence and lose the flow of what I’m writing. The people in the hotel room next to mine are watching TV when I’m trying to fall asleep.

Annoyance is the fly buzzing around my head; frustration is taking twenty whacks at it and missing every time.

Thanks to Asperger’s, I have more than a passing familiarity with irritability, which has roots in sensory overload. I’m overtired. I’m hungry. I’m hot. My shirt is scratchy. I’ve ignored my sensory limits one too many times and it’s turning me into a cranky toddler. Danger, danger, shutdown is imminent.

And thanks to being a mom, I’ve discovered wrath, which is what I’m calling that mama lion feeling that comes charging out its hiding place when someone messes with my kid. Bad idea. Enough said.

For some inexplicable reason, right after wrath, I added fuming to my notes. There’s little relation between the two–wrath is primitive and instinctive. This other thing–the one that makes me seethe with anger and vow to right some perceived bureaucratic wrong like I’ve just been granted membership in the Justice League–is purely intellectual. It doesn’t happen a whole lot, but when it does, I’m a force to be reckoned with. Pass me my cape and stand back.

The Big Three

All of that so far? I’m fine with it. It’s the kind of anger that comes and goes. What follows, the big three of indignation, alienation and rage, those are more firmly entrenched.

Let’s start with the one that’s been with me the longest: indignation. Indignation arises from humiliation, shame, fear of not being good enough, from feeling invisible, stupid or ignored. It’s the way my vision blurs when someone treats me like I’m an idiot for asking the same question too many times. It’s the hot blush I can’t control when I say something that falls on deaf ears. It’s the blood pounding in my ears when someone lectures me like I’m a child.

Indignation is wanting to scream I get it, I know, I understand, I’m here, I have something to say, slow down, I can do this, stop trying to fix-help-correct-educate me. It’s been with me for as long as I can remember. It festers in the broad gap between intellectual ability and social skill.

Alienation arrived later, sometime in early adulthood, but it sits stubbornly beside indignation with no plans to leave any time soon. It may be odd to describe alienation as an expression of anger, but as my husband put it, “you’ll shut someone out for 5 years instead of yelling at them for 5 minutes.” That’s an exaggeration, but not by much.

My capacity for resentment is deep and wide.  I lack confrontation skills. Never learned them as a child, didn’t see much use for them as I moved into adulthood. It’s easier to stay mad. In my twenties and thirties, my anger fueled my actions and propelled me through a lot of pain. It’s probably responsible for a good deal of my success. But clinging to that anger also cut me off from people in deep, possibly irreparable ways. Because that was easier, too. Still is. I’m working on it.

Because I avoid dealing with the feelings that swirl around indignation and alienation, they revisit me at night in the form of dreams–nightmares really–filled with rage. When I first started having these dreams about ten years ago, the intensity of them was startling. I would wake up thinking, who is that crazy woman? For a while, I thought there was something seriously wrong with me. I was turning into a freakish mutant–mild-mannered woman by day, raging she-Hulk at night.

Recently I’ve discovered a pattern to the anger and violence of my nightmares. Understanding why they happen doesn’t make them any less disturbing, but it’s helped me formulate a strategy for reducing their frequency. Which is (and will be) a post in itself.

The Anger that Goes Straight to My Hands

Finally, another of those feelings that doesn’t have a name. In the same way that I experience pure undistilled happiness, I also experience a very pure form of anger. It starts in my brain and terminates in my hands. It’s reflexive. White hot. Short-lived. Irrational. More chemical or electrical than emotional.

It’s like this: my husband bumps into me in the kitchen and I impulsively, irrationally get the urge to punch him. And here’s the weird thing: I’m not mad at him. I’m not mad at all. I’m experiencing the emotional equivalent of touching my hand to a hot stove. Trigger→physical impulse to react. There’s no cognitive processing involved. I’m not thinking. I’m reacting.

This feeling is almost always triggered by a physical experience and only happens when I’m hovering near my limit for sensory stimulation. I’ve learned to control the physical impulse. The trigger hits, I feel a spike of intense negative energy surge from head down my spine, and I still my hands until it passes.

That last part is key. If I didn’t hold on tight and ride out the physical impulse, I would lash out with hands at whatever was nearby, punching, throwing or breaking something to dissipate the energy in my hands.

When I read stories about children lashing out violently, I wonder if this is what they’re feeling. Maybe it’s not anger in a traditional sense but the need to release a sudden incomprehensible surge of energy.

A Universal Reaction

Most often my reaction to any form of anger is that I want it to stop. I didn’t learn how to express anger constructively as a kid, only that it was undesirable.

While I was doing some research about anger and autism I can across an interesting study (Rieffe et al (2007) ): in a group of ten-year-olds who were surveyed, all of the neurotypical kids reported experiencing anger, but only 77% of the autistic kids said that they ever experienced anger. (All of the kids in both groups reported feeling happiness so we can rule out the myth that autistic kids simply don’t feel emotions as an explanation.)

I wonder if some of the autistic kids in that study were like me at that age–afraid to admit to an emotion that they’d been taught was bad. Because at ten years old, if an adult asked me if I ever got angry, I probably would have said no. I didn’t want to be seen as a bad kid and I thought only bad kids got mad at stuff.

My literal aspie brain didn’t perceive the difference between “expressing anger in destructive ways is bad” and “expressing anger is bad.” What I really needed was for someone to specifically say, “when you’re mad, here are some things you can do about it.”

Anger as a Protective Mechanism

Anger is an expression of a violation of my person. If I deprive myself of the right to express that, then I’m depriving myself of the right to have boundaries and to keep myself safe.

As I read back over that last sentence, I was struck with one of those big “aha” moments that sometimes happen while I’m writing. As I’ve grown older, I’ve gotten better at defining boundaries and structuring my life in a way that supports those boundaries.

So much of my anger as a teen and young adult was related to feeling vulnerable and inadequate. As those feelings have dissipated I’ve released a lot of the deeply entrenched anger that built up during those years. I’m arriving at a place of acceptance. I’m slowly dusting off the layers of my adult self, like an archaeologist at an ancient dig site, careful not to damage what I’m uncovering.

As each new layer reveals some fascinating little detail, I scramble to integrate it into my understanding of myself and marvel at the fact that this much self discovery is possible at my age.

Aspergers Marriage

Lessons from an Aspergers-NT Marriage (Part 1)

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Being married to someone with Asperger’s Syndrome is challenging.

Okay, that’s an understatement. Some people might go so far as to say it’s impossible. A quick internet search on ‘Asperger’s marriage’ will turn up plenty of horror stories.

Being married to an aspie is hard work. There are times when the neurotypical partner may feel more like a caregiver than a spouse, especially if the aspie partner’s symptoms are severe.

But if you’re in an Aspergers-neurotypical marriage, you didn’t get there by accident. You’ve made a deliberate choice to share your life in what is essentially a cross-cultural partnership. Like any cross-cultural exchange, an aspie-NT marriage can be a rewarding experience or a nightmare.

There isn’t a lot of self-help literature available for those of us in aspie-NT marriages, especially for aspie women married to NT men (the reverse combination is far more common). Beyond the usual factors that determine the success of a marriage, there are a few unique areas that can make or break an aspie-NT marriage:

  • How severe the aspie partner’s symptoms are
  • How socially skilled the NT partner is
  • How willing both partners are to work on the areas they can improve and accept the ones they can’t

As a woman with Asperger’s Syndrome who’s been married to a neurotypical partner for 25 years, I feel like I’ve lucked out in all three areas. I’m at the higher functioning end of the autism spectrum and my husband, The Scientist (as he’ll henceforth be known here), has solid social skills. Most importantly, we’ve become very good at both adaptation and acceptance.

It hasn’t always been easy. Sometimes it’s been damn near impossible. More than once we’ve considered whether we might be better off apart than together. But we’ve also found some surprising benefits to our aspie-NT partnership. Hopefully some of what we’ve learned will be helpful to other couples that have taken on the challenge of making an Aspergers-NT marriage work.

(By WordRidden via Flickr. Used under Creative Commons License.)

In no particular order, here are 12 lessons that we’ve learned (often the hard way):

Divide up household and family responsibilities according to each partner’s strengths.

I have a good sense of my strengths and weaknesses. I’m good with organizing and scheduling. I suck at ironing. I have the patience to help with homework and sit through two-hour soccer practices. I should never be allowed to handle power tools. I enjoy the research involved in managing the household finances. The thought of calling up a neighbor to confirm that we’ll be attending a party causes me to procrastinate for days and need a nap afterward.

If you’re lucky, you have a partner with some different strengths and weaknesses than your own. Dividing up the household responsibilities accordingly makes life easier on both partners and addresses one of the biggest potential pitfalls in an aspie-NT relationship: the tendency for the NT partner to feel like a caregiver rather than a spouse or a lover. If the aspie partner has some clearly designated responsibilities at which she excels, delegating her weak areas to her partner can feel less like a failing.

Successful partnerships are built on a rational division of labor and a marriage is no different.

Apologize when you do something that your partner finds hurtful.

This is true for both partners, but especially for the aspie partner. There are times when it’s hard for aspies to see why something is hurtful. Get over it. It doesn’t matter if what you said or did was unintentional. It doesn’t matter if you meant well. It doesn’t matter if you think it’s silly or meaningless. Just apologize.

I know this can be difficult. My first instinct is often to say, “but that’s not what I meant” or “what’s the big deal?” This is a bad idea. If your partner is hurt by your words or actions, then it is a big deal. Ideally, your NT partner will be able to calmly identify what you did and how that made him feel: “I feel hurt when you point out in front of other people that I wasn’t paying attention to the conversation.”  And then you can just as calmly consider his point of view and apologize: “I’m sorry. I didn’t realize that would bother you. I’ll try not to do it in the future.”

Obviously, having this conversation calmly and lovingly can be a hard place to get to. For a long time, my husband thought I had a mean streak. After learning more about Asperger’s, he began to understand that my AS wiring is responsible for a lot of the dumb stuff that comes out of my mouth. Now he tries to calmly point out when I’m being insensitive.

We’ve both realized that even when he tells me that something bothers him, I may still do that something again in the future. I’ll try not to, but there’s no guarantee because Asperger’s makes it hard to generalize from one situation to the next. There’s a good chance I’ll say something similar without realizing it’s hurtful, because in my mind it’s not the exact same thing. It takes a leap of faith for the NT partner to give the aspie the benefit of the doubt when this happens, but this kind of trust may be one of the things that saves your marriage in the end.

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In part 2: bad days, social skill deficits and touch sensitivity

Social Skills

Rules to Live By

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When you have Asperger’s Syndrome, sometimes life feels one long “if . . . then” statement. If someone is crying, then they’re sad. If someone is sad, then they want a hug. If I give them a hug, then they might feel better.

From childhood I’ve been building up a database of if . . . then rules, hardcoding them into my brain through repetition. This is one of my core coping strategies for dealing with my Asperger’s on a daily basis. Without my if . . .then database, left to my own devices, I’d come across as much more autistic than I do.

If . . . then allows me to pass in an NT world. If . . . then gets me through most days without randomly offending people.

If . . . then, if . . . then, if . . . then.

In high school, I took a computer class that consisted mainly of learning BASIC, the programming language that ran the TRS-80 computers that populated the new and mysterious computer lab. I immediately fell in love with the clean simplicity of computer code. Everything was accounted for. Everything was explicitly declared in the code. If it wasn’t, the computer balked. Computers don’t infer.

My first computer was a  Tandy-Radio Shack TRS-80 like this one. See that cassette player? That was the “hard drive.” Old school geekery.

How simple life would be if we had to declare everything up front. If every task and interaction had a neatly nested set of if . . .then statements to be stepped through.

I spent hours programming simple text games. If ‘yes’ then ‘turn right’ else ‘turn left.’ It was fantastically binary. The elegant addition of ‘else’ allows for choice, but only one. Turn right or turn left. Open the door or leave it closed. Each choice branching off in two directions, creating a tree of neatly predefined decisions.

If you’re thinking a few steps ahead, you’ve probably anticipated the roadblock my fourteen-year-old self ran up against. Working further and further down the tree, choices multiplying exponentially with each new level, eventually I would be overwhelmed by the possibilities and abandon the game I’d been so excited about an hour before.

If . . . then, if . . . then, if . . . then.

There should have been a lesson there, but I began again and again, erasing the tape that held the code and starting with a fresh scenario. You wake up to find yourself locked in a padded room . . .

The computer was apathetic. Each time I started over, it displayed the same blinking gray cursor. It lacked judgment or even any real memory capacity other than the one I allowed it to have.

There was a predictability in coding that was comforting. The choices were finite. As long as I thought things through, there were no surprises.

I tried imposing this kind of order on the rest of my life, but people seemed reluctant to be programmed. They liked unpredictability. They didn’t need to know how every minute of  the day would unfold to enjoy it.

They had their own sets of rules. They seemed reluctant to share them.

If . . . then, if . . . then, if . . . then.

I’ve always been more of an observer than a participant. I watch. I collect data. Patterns emerge. A rule forms. I catalog it. Apply it. Adjust, adapt, reformulate.

Watching is safe. Quiet is safe. This is one of the first rules I learned and it stuck in the way that few have since. If I’m quiet, then I’m not getting yelled at. If I don’t say anything, then there will be nothing for anyone to make fun of. If I watch carefully enough, I can figure out what the rule is here without having to ask and look stupid.

The rules kept me safe. They created a positive feedback loop, naturally rewarding me for following them and punishing me for deviating from them.

But over time, the rules boxed me in. There were rules for school, rules for work. Rules for marriage. Rules for motherhood. Slowly, unconsciously, my life narrowed, and narrowed further still. Like my game collapsing under the weight of exponentially growing options, the rules became more of a burden than a support.

I forgot about the elegant ‘else.’ Choice receded, rigidity crept in.

Breaking the rules was unthinkable. If . . . then. Stay within established parameters. If you can’t find a rule for it, avoid it. Breaking the rules causes dire consequences. So dire that they’re unknown.

If . . . then, if . . . then, if . . . then . . . else.

Understanding Asperger’s Syndrome has helped me rediscover the beauty of else. I have choices. The rules are malleable. I made them; I can unmake them.

The rules are supposed to serve me, not the other way around.

Editing the rules is hard, but I’m trying.

Many stay. They’re useful. Necessary. They’re how I pass. Offer someone a beverage when they visit your house. Leave an empty seat between you and another person on the train. Kiss your husband goodbye when he leaves home in the morning.

Some stay in spite of their apparent uselessness. They’re harmless. They give order to life. Always swim an even number of laps. The bowls face to the left in the dishwasher. Dry your hair first after showering. The blue towel is mine.

The bad rules get deleted, though not without a struggle. The house has to be spotless if guests are visiting. Items on the ‘to do’ list must be finished by the end of the day no matter what. Iced coffee has to come from Dunkin’ Donuts.

People gift me with the rules that I fail to intuit. When you say goodbye, look at the person you’re talking to, not the direction you’re about to walk away in. If you have something important to say, wait until you’re face-to-face to start the conversation.

New rules emerge, from conscious thought not patterns. Think before you automatically say no to a spontaneous change of plans. There is more than one right way to do something.

If . . . then, if . . . then, if . . . then.

I add, delete, overwrite, reorder, sort, categorize, refine. Rules that make my life easier. Rules that help me struggle less. Rules for order and rules for efficiency. Rules to create structure. Rules for navigation.

I develop if . . . then tests for the rules:

1. If a rule prevents me from making a spontaneous choice then it’s too restrictive.
2. If a rule negatively impacts someone I love then it’s probably doing more harm than good.
3. If a rule was created more than five years ago then I may have outgrown it.
4. If a rule makes me sad, angry, tired or anxious then I need to question its origins.

The rules continue to evolve. I’m learning to break the ones that need breaking. Sometimes that’s freeing. It leads to laughter, spontaneous joy, new discoveries. Other times: resignation, regret, disappointment, confusion, fear.

This is life.

Life is not a TRS-80. Life is a wondrous, messy, untamable process.

So here is my newest rule: worry less about the rules.

Be more authentic. Embrace my quirks. Trust myself.

Sensory Processing

Where I Go When I Shutdown

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This is loosely related to last week’s post on flat affect. When I look blank or checked out, sometimes it’s because I’ve withdrawn or shut down.

—–

“You disappeared.”

When my husband said this to me, we were sitting in a restaurant waiting for lunch to arrive. It was the tail end of a great weekend at the beach and I was off in my own world.

Withdrawal. Shutdown. You’ll hear people with Asperger’s use different words for the disappearing act we perform under stress.

For me, withdrawal feels more accurate. The sensory input becomes too much. Too many people, too much noise, too many decisions, too little time to process it all.

Sitting in the restaurant, I felt the telltale signs of withdrawal creeping up on me. The first is a sudden heavy sleepiness. All I want to do is put my head down and close my eyes. Or better yet, curl up in a nice safe place and take a nap. Of course, the urge to withdraw almost always hits at at a time when a nap is impossible and there are no safe places nearby.

The second sign–the one that makes it clear I’m not just overtired–is the sensation of moving through a long tunnel. Everything around me recedes and grows quieter. I feel myself disconnecting from the conversation. It becomes harder to formulate responses and I have no motivation to initiate any interaction.

Once I’ve drifted far enough into the tunnel, I’m quite content to sit and stare off into space, detached from everything that’s happening around me. I feel invisible.

Cumulative Stress

My withdrawals are almost always triggered by cumulative stress. The morning leading up to that lunchtime withdrawal was marked by a series of little frustrations. On any other day, I would have simply rolled with them, but I think two days of being in an unfamiliar environment was silently taking its toll.

The scene of my latest shutdown

Suddenly the music in the restaurant was too loud, the sun was too bright, I couldn’t tune out the conversations at the tables around me, the menu had too many options, none of which looked good. Sitting half in the sun and half in the shade, I was too cold and too hot at the same time. Every time I looked up, the guy at the next table quickly looked away–and I think that was the last straw.

Lately I’ve been thinking a lot about why I frequently catch people staring at me, often repeatedly over the course of a meal or a train ride. So off went my perseverative brain, puzzling over that question again. Then–bam–the sleepiness rolled in and next thing I knew I was slipping into the tunnel.

Going Offline

Contrary to how it must look externally, when I’m withdrawn I’m not sad or depressed. Sometimes a withdrawal is triggered by anxiety but sometimes it’s triggered by having too much fun. Whatever the trigger, a withdrawal is always the result of being overwhelmed.

Once I’ve disappeared, though, the dominant feeling is one of comfortable blankness. Relief.

Withdrawing or shutting down is obviously a defense mechanism. My brain decides that the processing demands of my environment have become too high and it takes some resources offline for a while. The withdrawal itself is restorative, a sensory timeout, but it’s not voluntary and even when I know it’s happening, there’s little I can do to stop or control it.

I’ve been thinking about that a lot. Do I need to control it? Do I want to? Ideally, it would be nice to delay a withdrawal to a more convenient time, like during the drive home instead of in the middle of lunch. I’m not sure if this is possible. The urge to withdraw is a strong and physical, more like being hungry than being sad. I can talk myself out being sad, but being hungry only goes away if I eat something.

Looking at a withdrawal as a physical need makes it easier to see that it’s not something I can simply distract myself from. Still, I hate the idea of feeling helplessly ruled by my body. Maybe the answer lies in what comes before the withdrawal, that series of little frustrations made worse by being out of my element.

I’m getting better at managing unexpected change. I’m slowly learning to embrace the unfamiliar. I’m becoming more mindful of the ways my physical comfort affects my emotional shifts. But perhaps I’m still too good at stuffing down the negative emotions, the little discomforts and anxieties that don’t feel important enough to waste energy on.

Resurfacing

Normally if someone tries to engage me in conversation when I’ve shut down, all they get are monosyllabic answers. When my husband asked, “where are you?” my nonanswer was “why?”

He paused  a moment, probably wondering if he was doing the right thing by confronting the situation head-on and then he said, “You disappeared.”

That simple acknowledgement of what I was experiencing helped me re-engage with him. We’d never talked about my withdrawals before. My husband has always, I think, assumed they were simply “bad moods,” something to be ridden out and ignored.

They’re more than that, and now he has a better understanding of not only where I go when I disappear but how I feel and why it’s not entirely a bad thing.

Motherhood

Asperger’s and Motherhood (Part 6)

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This is the final post in a series about being a mom with Asperger’s.

There’s some question about how having a parent with Asperger’s affects a typical child. I definitely see ways in which my aspie behavior has influenced my daughter’s behavior. She’s told me stories about how friends at college or colleagues at work have pointed out deficiencies in her social skills. Although she’s a very empathetic, compassionate person with a high emotional IQ, she occasionally does things that others consider thoughtless.

Recently, Jess was talking with a friend who was discouraged by his job search progress. Her response was much like mine would have been. It’s a tough job market for new graduates and you just have to keep at it. When he expressed his frustration at how unsympathetic she was being, she realized that she was saying to him what I would have said to her.

Although she understands social nuances, she sometimes chooses not to “play by the rules” because she’s seen how a less conventional approach has affected her at key points in her life and she finds some value in it that is probably hard for people raised in typical families to relate to.

She’s also related stories to me where she was shocked to find out that other people thought she was being rude–for not sharing a birthday treat, for example. These were instances where she simply didn’t think about what the right thing to do in that situation was. More than one person has attributed these faux pas to her being an only child, but I think it has more to do with my AS than her lack of siblings.

So you can see where being an aspie mom is going to result in your kids picking up some socially unacceptable habits, no matter how hard you try or how socially adept they seem to be.

Having an NT partner or spouse can go a long way toward helping you “mind the gap” when it comes to parenting. My husband is everything I’m not when it comes to social skills. He’s naturally compassionate, outgoing, empathetic, and confident. He can walk into a room full of strangers and strike up a conversation with anyone. People instantly love him. When it comes to our daughter’s social skills, I give him 100% of the credit. He modeled behaviors for her that don’t come naturally to me and that I’ve never learned to fake well.

As parents, we haven’t always seen eye-to-eye. There were times when he thought I was being too cold-hearted and there times when I thought he was being too sentimental. We’ve had to compromise on some issues and agree to disagree on others. We’ve both made mistakes. But we’ve also come to realize that we have our own strengths.

When Jess needs sympathy or relationship advice, she usually talks to her dad. When she needs help filling out forms her new job or fixing her computer, she calls me. She intuitively worked out what we can each give her as parents long before any of us knew what Asperger’s was.

That’s the thing about moms with Asperger’s and their kids: they know how to adapt.

Ranting

The One Where the Aspie Rants About Empathy and the Experts

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I just finished watching an educational DVD that was supposed to provide “simulations” to help parents and teachers develop empathy for kids with Sensory Processing Disorders.

And now I’m annoyed.

A sampling of the simulations on the DVD:

  • walk toe-to-toe with your eyes closed to simulate vestibular dysfunction
  • search for an item in your purse with your eyes closed to simulate tactile dysfunction
  • do chair push-ups to simulate proprioceptive dysfunction (huh?)
  • play charades to simulate . . . I don’t even know what the point of that one was except maybe to give one of the participants the chance to make the brilliant observation, “I know that reading facial expression is so hard for kids with autism.”

Oh, the empathy! I feel better already.

I probably could have overlooked the poorly designed exercises and been happy with the tips I picked up on dealing with sensory dysfunction, except for two things. The class of occupational therapy students demonstrating the simulations giggled their way through most of the exercises like they were party games and at the end the instructor wrapped with, “Now that you have felt what it’s like to have a sensory processing disorder . . .”

To which I shouted back, “Lady, you have no fucking clue!”

The simulations on the DVD were the equivalent of closing your eyes for thirty seconds and then thinking you know what it means to be blind.

Caution: Stunts performed on a Closed Track by Expert Aspie

What would the simulations look like if someone who actually knows sensory dysfunction feels like designed them? If that someone happened to be an angry autistic woman who’s had too much coffee, they’d look like this:

Proprioception* dysfunction simulation #1: Welcome to class! Let’s get started with the exercises. As you go to take your seat in the classroom, miscalculate how far you are from the first desk in your row, catching your thigh on the corner of the desk and knocking your classmate’s pen and water bottle to the ground. When you bend over to help him pick them up, bang heads with him. Ignore his exasperated sigh and pretend that every single person in the room isn’t either staring at you or carefully avoiding staring at you.

Proprioception dysfunction simulation #2 (bonus take home exercise): Pick a morning when you’re late for work. As you get ready to head out the door, grab your coffee mug with enough pressure to get it off the counter, but not enough hang on to it. Curse loudly as it crashes to the floor in a mess of shattered ceramic and hot liquid. Curse some more as you cut yourself cleaning up the shards of ceramic (damn you, fine motor coordination).

Repeat daily. Let me know when you’re ready to start adding in the other 6 areas of sensory dysfunction.

Now That I’m Feeling Less Ragey . . .

. . . I’ll try some constructive criticism.

This DVD felt like a misguided attempt at turning SPD into an “experience” to build empathy in OT students. While the sentiment is admirable, I think the big danger is that once someone assumes they know what another person is experiencing, they stop listening.

Perhaps that’s why the creator of this DVD failed so miserably with the simulations portion of the program. If she’d run it by a few adults with SPD, I’m sure the exercises would have looked different. Even better, she could scrapped the simulations altogether and devoted that portion of the program listening to adults and children with SPD talk about what it’s like to have a hypersensitive tactile response or hyposensitivity to pain.

Yes, the instructor on the DVD has an OTR/L after her name. That makes her an expert in occupational therapy, not in having an SPD. A five-year-old with an SPD is more of an expert in what that feels like than an adult with a dozen letters after his or her name.

As someone who struggles with mild to moderate sensory integration issues, I don’t think it’s possible to create exercises that replicate that experience for neurotypical people. And if the goal is to create empathy for people with SPD, I think there are better ways of going about than a few minutes of engaging in a botched imitation of what it might be like to live with SPD.

Empathy is “the capacity to recognize what another person is feeling.” Nowhere in that definition is there a requirement to experience first hand through simulations what the other person is feeling. To recognize what someone is feeling, I’ve found it’s helpful to ask questions and listen carefully to the answers.

As exercises go, it’s a simple one.

And yes, this is the aspie giving advice on empathy. Go figure.

—–

*Proprioception refers to your awareness of the position of your body. You can find a great summary of what types of activities might be beneficial for improving proprioception and other physical attributes in children with autism at Physical Exercise and Autism fact sheet. You can find some examples of therapuetic activities for kids with SPD at Activities for kids with sensory processing disorder.

Communication

You Scare Me

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Last summer, my husband and I had some new friends over for lunch. They brought along their two young boys. Toward the end of the meal, the 5-year-old, who was sitting next to me, looked at me and said, “You scare me.”

This was pre-Asperger’s, so like everyone else at the table, I laughed it off as one of those inappropriate things that kids sometimes say.

Still, his comment stayed with me. I couldn’t figure out what I’d done to scare him. He was a friendly, talkative little boy. I’d showed him how to get my dog to do a couple of simple tricks and had given him some bits of hot dog to use as treats. I’d asked him about his swimming lessons and whether he wanted a dog of his own. I’d cooked him a cheeseburger so he wouldn’t have to eat the fancy grown-up food. He’d even chosen the seat next to me at lunch. I thought we were getting along great!

And then, out of nowhere, he told me that I was scary. I was more puzzled than offended, but there was something about his comment that really stuck in my head. Sometimes when I’d catch people staring at me in a restaurant or a store, his words would come back.

You scare me.

Why?

A Hard Truth

Months later, I was sorting through boxes of photos and it hit me. There it was–there I was–staring back at myself from photo after photo with the dreaded flat affect. Since they say a picture is worth a thousand words, here’s how a flat affect looks:

And to prove that wasn’t just me getting caught at a bad moment, here’s one I actually posed for:

Smile! Or not . . .

These pictures are hard to share. I don’t like looking at them. In fact, I almost never like looking at photos of myself. If I don’t have a blank expression, I tend to look like I’m faking a smile or making an uncomfortable, when-is-this-going-to-be-over expression.

As I was sorting through twenty-plus years worth of photos before we moved, I found dozens or maybe hundreds of pictures of myself with some variation of a blank, checked-out expression. I don’t know why I hadn’t seen it before but there it was. Standing in front of the Christmas tree. Attending a wedding. On vacation.

One after another, I tossed them in the trash bag on the floor beside me, tired of looking at this woman who was starting to scare me.

Flat Affect

From my reading about Asperger’s I was aware of the difficulty aspies have in reading facial expressions, but it hadn’t occurred to me that I don’t project appropriate facial expressions–or sometimes any expression at all.

The technical term for this is flat affect, which means that a person displays reduced emotional expressiveness. It takes a five-year-old to put it in plain English though: you scare me.

Looking at those photos, hundreds of them in a row, for hours on end that afternoon, I finally answered the question why? Flat affect is unsettling to others–it makes me look bored, angry, sad or spaced out at inappropriate times.

To a five-year-old, who is probably relying more heavily on nonverbal than verbal communication to judge adults, my inappropriate or absent expressions were creating mixed messages. Though I was saying and doing “nice” things, the nonverbal expressions I was projecting weren’t the typical “kind, caring adult” cues he was expecting to go with my words and actions.

Maybe I Can Learn to Fake It?

The disconnect between my expressions and thoughts is frustrating. Not only do I have trouble verbalizing my emotions but my face keeps wandering off on its own and freelancing.

More than once I’ve had a professor pause during a lecture to ask me if I had a question. One day, curious about why this happened so often, I finally said, “No, why?”

“Because you’re frowning,” the professor replied.

Surprised at his reply, I blurted out, “I’m not frowning. This is my concentrating face.”

The rest of the class laughed, but the question was right up there with you scare me in how deeply it unsettled me.

Obviously I was projecting something different from what I was experiencing internally. There I was sitting in calculus class day after day, looking confused, but never asking any questions. This made my professor so uncomfortable that he stopped in the middle of his lecture to ask me what my problem was. I wonder if he even believed me when I told him I wasn’t confused.

I wonder how often people think I’m being deceitful because my verbal and nonverbal communication doesn’t match.

This is a problem that feels too pervasive to fix. I’m literally projecting an expression of some sort during my every waking moment. There’s no way I could–or would even want to–pay attention to what that expression is all the time.

There are also plenty of times when my expression does agree with my disposition, especially when I’m genuinely happy.

Here’s a photo taken around the same time as the above two shots, except in this one I was truly happy and look it:

Since that exchange with my calculus professor, I’ve occasionally tried projecting a specific expression. In class, if I noticed a professor glancing in my direction too often, I assumed that I was doing the confused face and tried put on my “interested but neutral” face. I also made sure to nod a lot, a reassuring sign to NTs.

It seemed to help–it at least reduced the number of concerned looks in my direction–but I’m not very motivated to do this on a regular basis. I’ve seen other aspies talk about how acting lessons or practicing in a mirror helped them overcome flat affect. I admire their commitment to doing this–it sounds like it would take a lot of time and practice to get right.

Then again, if I had a job that required a lot of contact with the public, I might have the motivation to put more effort into improving the type of nonverbal cues I project. Maybe somewhere down the road it will be something I’ll decide to try but for now, I’ll just go on scaring small children and bewildering acquaintances.

Motherhood

Asperger’s and Motherhood (Part 5)

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This is the fifth in a series of posts about being a mom with Asperger’s.

As adolescence drags on–yes, some days it feels like it will never end–you may run into some serious challenges. The child who thought you were the coolest mom on Earth suddenly thinks you’re a moron. She doesn’t miss a chance to remind you that you can’t do anything right. That you know nothing. That you’re uncool and out of touch.

These words–and worse, the way they’re carelessly hurled at you–may hurt, but don’t panic. Teenagers all over town are saying the exact same thing to their NT moms and dads. Congratulate yourself on being a perfectly normal parent.

But the wild mood swings, sarcasm, unpredictability and sometimes downright meanness of teeangers can be especially hard on aspie moms. You may not be the most confident mom. Sarcasm, irony and biting humor might go right over your head, making you feel dumber than a box of rocks as your teen patiently explains the joke. And if you’ve shared your diagnosis, don’t be surprised if your teen decides at some point to use that against you. Teenagers are masters of dirty fighting. If it wasn’t your AS, it would be some other vulnerability, so again, you’re no different from the other moms.

Just like when you had that squalling little newborn, this is the time to call in reinforcements. At times you may need to turn over a challenging aspect of parenting to your child’s father, a grandparent or another safe supportive adult in your child’s life.

Don’t be afraid to ask for help if you feel like you’re in over your head. Teenagers can find themselves with adult-sized problems and because of our issues with executive function, we aspies may not always be the best source of guidance when a major crisis occurs. As a parent, you want the best possible outcome for your child, but as an aspie, you may not always be able to work out how to help him get there.

And for everything–big and small–that AS causes you to struggle with as a parent, I guarantee there’s something else that AS will make you amazing at. Your teenager will scoff at your poor fashion sense, but you may be the only one in the family cool-headed enough to teach her to drive without getting into a shouting match at every rolling stop and crooked parking job. And those research skills you’ve developed pursuing your special interests will come handy when it’s time to find the right college (or a good defense attorney).

My daughter’s friends found it amusing that I would spend hours trying to master the Playstation skateboarding tricks that they taught me or that I didn’t care if they wrote all over the wallpaper in her bedroom. More than once I heard the words “your mom is cool” whispered as I left the room.

Still, it wasn’t always easy having kids, and later teenagers, in the house, especially if the visits were unplanned or didn’t have a defined end to them. Even if you’re okay with the noise and mess that teenagers bring into your home, you may find the uncertain nature of their visits hard to handle. I spent a lot of evenings on edge because of the general anxiety caused by having extra people in the house, but I learned to put up with as much as I could, because I knew it was important for Jess to be able to invite friends over and have a relatively normal social life.

If your teen is sympathetic, it may help to sit down with him and discuss why certain ground rules are important to you. For example, if you need a quiet, safe place to escape to, it may be important for you to not have anyone upstairs where you can hear them when you retreat to the sanctuary of your bedroom. Perhaps you need the kids to clean up their messes or not cook foods with strong smells. Visits may be more tolerable if your teen limits her guests to just a couple and respects your need for the visit to end by a specified time.

As the parent, you still have a lot of control over what happens in your own house, even as your children approach adulthood. While asking your teen to make accommodations for your AS might mean that the rules at your house are stricter or stranger than those at her friends’ houses, those rules might be the difference between you being able to enjoy having your teen’s friends in the house or dreading it.

Next in the series: Am I contagious?