See. Understand. Experience. Autism.

This morning I wrote a post about adult autism. I came to the keyboard armed with statistics. I hashed out arguments. I agonized over the wording. I framed my life in terms of the grim numbers I’d found in the research.

When I was finished, I walked away from the computer feeling unsatisfied and restless. Does knowing that 14% of adults with ASD are married or 25% have at least one friend really mean anything? We can create a composite of averages, saying this or that about adults with autism, but that composite person doesn’t exist.

The average American family has 1.86 children. Do you know anyone who has 1.86 children? Of course not. The averages are just that. Fictional composites created by aggregating data and finding the mean. Ironically, that mean often doesn’t exist.

We can’t define autistic adults using averages any more than we can have 1.86 children in our family.

Starting Over

Tonight, I did what writers do. I deleted four hours worth of work and started over.

I decided to leave the statistics to the people who really need them, the advocates and policy makers, for whom they are tools of the trade.

Through the lens of humanity, quantifying something so complex and varied is a futile undertaking. The minute we divide ourselves into those with friends and those without, those with jobs and those without, those with partners and those without, we set up a false dichotomy.

Life is a journey, not a snapshot. We may shift in and out of those categories on our journey. We may intentionally choose not to join one side or the other. We may choose not to be quantified according to another’s standards of functionality.

We are individuals and as such we can only be understood as individuals, one at a time.

As I so often do, I went to the opposite extreme in search of inspiration. I abandoned statistics in favor of Tibetan Buddhism.

If I could explain in words how I got from one to the other, I would, but the closest I can come is this: I found myself standing so close to this subject that I felt blind to the shape of it and as I struggled for a solution, shuffling through bits of ideas and images and memories in my head, puzzling out how to describe something that refuses to take a single shape, I came upon a fragment of the quote below, stored up from some long ago reading or lecture:

Click on the photo to see a larger version of the saying                                                             photo: By Ben Tubby (originally posted to Flickr as Makalu) CC-BY-2.0 via Wikimedia Commons

Like the mountain, our lives need to be observed at a distance. To take any one moment and say it defines who I am is to diminish the whole of me, the greatness and complexity of all that I’ve been and will become.

Like the mountain, the form of our lives can only be understood fully by taking stock from all sides. Look at my life from one side and it looks dull, flat, unformed. Look from another angle and you’ll find texture and depth, hidden crevices jagged with fallen rocks and outcroppings worn smooth from the battering winds.

Like the mountain, experience reveals us to ourselves. Walking through rain and snow, basking in the sun, weathering the storms, we find our strength and frailty, we form bonds with others and choose which paths to walk alone.

With each passing season, I feel myself growing and changing, sometimes subtly, sometimes violently, but changing, always changing.

To see, to understand, to experience.

Instead of the statistics I’d planned to leave you with, I’ll give you people, others on the spectrum who are sharing their stories in their own words:

Amy Sequenzia (@ ollibean)
Anabelle Listic
Aspects of Aspergers
Aspergirl Maybe
The Asperger Cafe
Aspertypical
Autism Raising Autism
Bridget
Catastraspie
coyotetooth13
Fionn
E (The Third Glance)
Elizabeth J. (Ibby) Grace
Gretchen Leary
Happily Clueless
Henry (@ollibean)
Inner Aspie 
Jeannie Davide-Rivera
Lydia Brown
Lynne Soraya
Mados
Neo
Quirky and Laughing
Radical Neurodivergence
Sadie
Samantha Craft
Spectrum Scribe
The Caffeinated Aspie
Unstrange Mind
Yes, That Too

See.

Understand.

Experience.

—–

If I’ve linked to you above and you’d like to be listed differently (or not listed), please let me know via twitter (@aspiemusings) or in the comments.

Eye Contact: The Conversation within the Conversation

Making eye contact–or more precisely, not making eye contact–is a big issue for people with Asperger’s. Neurotypical people seem to be especially frustrated and confused by this aspect of aspie behavior.

Even the professionals, who can offer up all sorts of theories as to why we don’t make eye contact, don’t seem to get the fundamental issue. In one study, the author pointed out that people with AS don’t make use of expressive information in the facial region of the eyes, “even when it’s available.”

That last part made me laugh. That’s like giving a Russian/Japanese dictionary to a person that can’t read either language and asking them why they aren’t using it. Just like that dictionary, the part of the facial expression around the eyes is a foreign language to an aspie.

Reading Expressions: The Eyes Test

I’m moderately good at reading facial expressions. I get the biggies like happiness, sadness, surprise, anger, and confusion. More subtle expressions–those that rely most heavily on the use of the eyes and the area around the eyes–are much harder for me. For example, on this list of 30 facial expressions, I would not have correctly identified the ashamed, concerned and contempt faces.

It’s important to note that “reading the mind in the eyes” (as the professionals call it) involves more than just the eyeballs themselves. It requires understanding how the subtle changes in the muscles around the eyes convey emotion. This becomes more obvious when you take the creatively named “Eyes Test” which requires you to use just the portion of the face between the nose and forehead. If you’re curious, you can find and take the test here:

Instructions (scroll all the way to the bottom of this file for the record sheet and scoring key)
Eyes Test Part 1
Eyes Test Part 2

(You can also find an interactive version called Reading the Mind in the Eyes at Test My Brain but you need to enter some demographic information to take it.)

I did surprisingly well on the test and here’s why: I cheated.

I suspect that most NTs taking this test would look at an expression and spontaneously have an idea of what the expression was. This is probably why the instructions say to choose an answer as quickly as possible.

How did I cheat? Before even looking at the expressions, I found myself reading all four possible answers. Then I looked at the expression and began the process of elimination. Here’s one of the expressions from the test with the four possible answers:

A sample question from the Eyes Test

My process of elimination: I know right away that it’s not dominant or horrified. It looks more like friendly than guilty, so the answer is friendly. If I hadn’t been given four choices for each expression, there is no way I would have spontaneously provided some of the more subtle answers like insisting or uneasy.

Obviously, in a real-time social interaction, no one is going to have four possible emotional options floating around their head to help me guess at what they’re feeling. Like most aspies, I’ve learned to use other information to try to fill in the blanks when it comes to facial expressions. I often focus on a person’s mouth, which I find conveys emotions more explicitly to me than the eyes.

I can gather some additional data from a person’s voice, especially when I know the person well. When my daughter calls me, I can tell from the way she says “hi” what kind of mood she’s in and what the conversation will likely be about. Unfortunately this only works with people I know well.

Over time I build up a databank of voice qualities for a person. With enough conversations in the databank, I need only a few words to recognize the happy voice, the lying voice or the you’re-not-gonna-like-this voice.

Why Learning to Read the Eyes is Challenging for Aspies

If we can learn all of these work-arounds and hacks for reading emotion in others, why can’t adult aspies just learn to read the eyes?

There are programs to teach children how to do interpret facial expressions. But for adult aspies, it’s a bit more complicated. We’ve grown up and spent decades of our lives not making eye contact.

Are we unable to read the eyes because we don’t make eye contact and therefore don’t have a rich enough data bank to draw on?

Or . . .

Do we not make eye contact because we discovered early on that the eye region doesn’t hold any useful data for us and our limited data gathering abilities are better “spent” on areas like (in my case) the mouth or voice?

It sounds like a classic “chicken and egg” scenario, doesn’t it?

Add to that level of discomfort that many aspies feel when it comes to making eye contact and it’s easy to see why learning to use and read the eyes in social interaction can feel like such an overwhelming prospect.

Is Making Eye Contact Multi-Tasking?

More than once I’ve read the suggestion that autistic people don’t make eye contact because we have trouble doing two things at the same time. This strikes me as ridiculous. Is making eye contact and talking really the equivalent of doing two things at once? If that’s the case, what about walking and talking? Running and talking? Driving and talking? I can do all of these things with no trouble. Sometimes I even talk while walking and chewing gum. How’s that for multitasking?

Moving on . . .

The wrong kind of eye contact!

When Eye Contact Becomes Too Much

The level of discomfort that people on the spectrum experience when it comes to eye contact varies from mild to unbearable. The discomfort also varies from situation to situation. I’m more comfortable making eye contact with people I know very well or hardly at all. People who I know somewhat (professors, fellow students, business acquaintances) are the ones who make me most uncomfortable when it comes to eye contact.

The discomfort goes beyond simply feeling weird. It’s a physical sensation. I physically feel like I can’t continue to look into the person’s eyes a second longer. If I do sustain eye contact beyond that point, I get a strong sensation of needing to flee the room.

The classic “fight or flight” symptoms suggest that my brain is perceiving sustained eye contact with certain people as a threat. Why is this? And why does it happen most strongly with people who I consider acquaintances but not strangers or intimates?

Perhaps it’s because I’m self-conscious about the uneven balance of social power in these situations? The other person is clearly gathering social data from my eyes but I’m not able to do the same. Ironically, given my small range of often inappropriate expressions, what they’re gathering is probably as useless as the fragments of nonverbal communication that I’m picking up from them.

Eye contact with strangers tends to be fleeting and meaningless. The exchange of information feels limited and safe. Eye contact with my husband or daughter, on the other hand, carries none of the social balance of power issues that I feel with acquaintances. I don’t need to worry about what they might be discovering about me or whether I’m missing some key nonverbal cue (because if I am, they’ll tell me).

Acquaintances, however, are still (or sometimes perpetually) in the “getting to know you” stage. We’re feeling each other out, gathering data that will determine the course of future interactions and cement our perceptions of each other.

For NTs, eye contact is a rich and layered language. It’s the conversation within the conversation. As aspies, we’re largely deaf to this language. It’s no wonder it makes us so uncomfortable when others try to “speak” to us with their eyes.

Asperger’s and Motherhood (Part 3)

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

As difficult as I found being the mom of a newborn, I really enjoyed being the mom of a toddler. Suddenly this demanding little creature was starting to walk and talk and explore the world around her. She was still demanding and unpredictable and messy, but she was also lots of fun.

Aspies are blessed with a childlike sense of wonder and innocence that never really goes away. Discovering the world all over again alongside your child is an incredible experience. And when your little boy or girl develops a fascination with butterflies or dump trucks, you can put your aspie tendencies to work: visits to the library, field trips to construction sites, collecting things!

As an aspie, you’ve already mastered one of the keys to parenting a toddler: routine. I’m betting you’ll find nothing wrong with reading Goodnight Moon every night before bed, six weeks running. If your toddler insists on watching the same episode of Blue’s Clues three times in a row, you’re not gonna be the mom who tells him how great it would be to watch something new once in awhile. Your son has to have one special toy with him everywhere he goes or your daughter wants to wear the same sundress every day of the summer? Makes perfect sense to me.

Jess at 17 months

When your two year old starts asking “why?” in response to everything, your natural aspie response will be to explain why the wind blows or why dogs bark. Your toddler will not only end up with vast amounts of esoteric knowledge, but she’ll learn that asking “why?” is a good thing.

Socializing Your Toddler (and maybe yourself)

On the downside, much of your toddler’s social life may depend on your own ability to socialize. Toddlers meet and play with other toddlers at playgroups, the park, and other “mom & me”  events. If your inclination is to avoid social situations, you may find the neighborhood “mom & me” playgroup unappealing. I certainly did. But I also knew that my daughter needed to play with other toddlers. She wasn’t in daycare, so until she was old enough for preschool, it was up to me to make that happen.

So off we went to learn how to finger paint and make macaroni necklaces.

The funny thing about these playgroups is that the moms are there as much to make friends for themselves as they are to socialize their children. This can be a great way for you to make friends around a shared interest (your toddlers!) but it’s not required. If the idea of spending a few hours at someone’s house while your kids play makes you uncomfortable, it’s fine to say thank you but you’re rather busy outside of playgroup.

I accepted exactly one play date invitation from another mom. It wasn’t a disaster, exactly, but it was a classic case of ‘wrong planet’ syndrome. The other mom and I had little in common and I didn’t have the social skills to bridge the gap. Looking back, I realize that we could have spent the hour talking about our toddlers. Faced with this situation now, I would have used the drive to her house thinking up suitable small talk questions. I also know now that “yes” and “no” are conversation killers, even when they’re accurate answers. When she asked me if I liked the playgroup, she didn’t want a literal answer, she was trying to elicit information to continue the conversation. A more suitable answer would have been something like, “Jess really enjoys storytime. Which activities does Peter like best?”

Jess had a great time playing with her new friend and I toughed it out for her, but that was the first and last playdate that required my attendance. Because I wasn’t armed with even the rudimentary social skills that I’ve since developed, I struggled to connect with someone who was reaching out to me and missed the chance at making a friend. Instead I came away thinking that there was something wrong with me and decided that it would be safer to decline future playdates rather than suffer through the kind of self-doubt I felt for days afterward.

Looking back on times like this, it’s easy to regret not knowing about my AS. It’s easy to say that it would all have been different if only I’d known this or done that. But I’m not sure it would have been that different. Today, if I was the mom of a toddler and another mom asked us on a playdate, I might be more likely to accept than I was twenty years ago, but I don’t think I’d necessarily enjoy it the same way a typical mom would. And I’m okay with that now.

Out Into the World 

As your child enters the preschool and early elementary school years, she’ll be old enough to go on playdates by herself. You may find this to be a great relief. I certainly did. Jess was good at making friends. Seeing her develop her own social network was exciting.

I’d never been good at making friends, but she seemed to have some sort of magic natural instinct for socializing. Maybe that’s just her personality or maybe she was compensating for my deficits. While the other kindergartners’ moms were arranging playdates for their kids, Jess was pretty much on her own. If she didn’t go out and find some kids to invite over after school, she wasn’t going to have much of a social life. But she quickly made friends and that paved the way for the years ahead.

And with friends came all sorts of new questions. There’s a lot of unfiltered knowledge floating around out there on school buses and playgrounds. As an aspie, you may be less shocked than the average mom by some of the questions your youngster comes home with. You also may be able to answer a lot of them without having to use your Google-fu.

As a result, your child will not only feel comfortable coming to you with questions, but you may find that your natural tendency toward bluntness combined with a higher than average level of emotional detachment actually creates a very open relationship. This tends to result in your child being willing to ask you anything or tell you everything. By the time she gets to high school, you’ll realize that in some cases, 90% of everything is more than enough.

Next in the series: How am I supposed to get this kid through middle school when I barely survived it myself?

I am Asperger’s, Asperger’s is Me

An autism diagnosis changes everything. Life after autism will never be the same. Or will it?
Painted Desert National Park, Arizona, January 2008

Before I studied Zen, mountains were mountains, and water was water.
After studying Zen for some time, mountains were no longer mountains, and water was no longer water.
But now, after studying Zen longer, mountains are just mountains, and water is just water.
~ Ch’ing-yüan Wei-hsin

An autism diagnosis is a lot like this. Inevitably, there is Before and After.

Before, I was me and Asperger’s was Asperger’s. My thoughts and actions were shaped by my personality, my upbringing, my environment and my choices. I thought of them as my own. Asperger’s Syndrome was something that described other people.

After learning that I have Asperger’s, I was no longer me and Asperger’s was no longer a label applied to others. Suddenly, I was Asperger’s and Asperger’s was me.

After, everything I do, say, think, feel, experience is Aspergerized. Exhausted after a long shopping excursion? Sensory overload. Tripped and fell while running? Motor planning deficit. Didn’t think to send my daughter the title to her car when she told me she was selling it? Poor executive planning.

“I’m an aspie” is my default explanation these days. I no longer know where Asperger’s ends and I begin–yet I constantly attribute my actions, thoughts and behaviors to this separate thing called Asperger’s.

While I appear to have a deeper understanding of myself thanks to my newfound understanding of how Asperger’s influences my behavior, there is a long journey ahead before “mountains are just mountains.”

The me that I was before learning about Asperger’s will never exist again. But the me that I will become–the me that no longer needs to differentiate between Asperger’s and I–that me is still a long way off.

When I arrive in the place where I can say I am just me and Asperger’s is just Asperger’s, before and after will cease to exist.

In that place, there is only now.

Bandelier National Monument, New Mexico, Oct 2006

You Can Do Something About That

sensory processing, executive function, and learning to recognize discomfort before it leads to a meltdown . . .

—–

Somewhere in my early reading about Asperger’s, I came across this idea: If something is bothering you, you can do something about it.

That seems like deceptively simple advice. If you’re cold, put on a sweater. If you’re hungry, eat something. If the sun is in your eyes, move or close the blinds or put on your sunglasses.

For a typical person, the idea that you can get up and put on a sweater if you’re cold is probably not an earth-shattering revelation. In fact, it’s something they’ve been instinctively doing since childhood. The typical brain receives an incoming message about physical discomfort, finds a solution and swiftly acts on it:

typical body: I’m cold.
typical brain: We’re underdressed. Stop what we’re doing and put on a sweater.
typical body: Good idea!

This is where the typical person gets up from the computer, goes to the closet and takes out a sweater. But for a lot aspies, the body-brain communication is dulled to the point that we appear to not feel pain, cold or other physical sensations in the way that typical people do. You often hear parents of autistic youngsters say that their children will play outside in the winter without wearing a coat or will injure themselves but continue playing like they haven’t noticed.

Based on my experience, I don’t think we necessarily feel pain or cold less. I think our body-brain communication is muted. As a result it takes a lot more sensory input from our bodies to provoke a reaction in our brains.

Here’s how my brain functions:

body: Something’s not right.
brain: Uh-huh . . .
body: No really. I feel strange.
brain: Yeah yeah . . .
body: I think I’m cold.
brain: Shhh, I’m busy.
body: Yep, definitely cold.
brain: Okay, I get it, you’re cold. Hmmm . . . maybe we should do something about it.
body: Look, I have goose bumps.
brain: I’m thinking!
body: Now I’m shivering.
brain: Okay, go get a sweater.

Even when I get to this point, I may put off stopping what I’m doing to get that sweater because in addition to the sensory processing issues of AS, there is the issue of poor executive function.

To understand the complex brain-body interaction problem that aspies struggle with, it might help to break it down into a few parts and look at them separately first.

Sensory Processing

Those of us with ASD have a tendency to put with stuff until we can’t anymore.

From childhood, we learn that the world is full of annoyances, big and small. Our clothes have scratchy tags and seams. The kids around us never shut up. We suffer through bad smells, weird food, annoying noises, uncomfortable temperatures. The list is endless and it differs for each of us. But I’m betting that one thing we have in common is that we get used to being physically uncomfortable.

Maybe we get used to it not only because we’re more sensitive to physical sensations but because the physical discomfort signal often isn’t strong enough to cause us to act on it. This sounds like a conflicting statement. How can we both more and less sensitive to the physical world?

Often I find myself feeling uncomfortable but I’m so deeply engaged in what I’m doing, that the discomfort hovers at the edges of my consciousness. It exists as low level background noise, not serious enough to make me stop and think about it, but not minor enough that I can completely ignore it. So I put up with it until it becomes truly impossible to ignore.

Of course, by that point it’s long past the time when I should have acted and the minor annoyance has ballooned into serious discomfort.

So what’s going on here? Why can’t an adult with supposedly above average intelligence figure out that she’s cold and the obvious solution is to get up and walk across the room to the closet to get a sweater?

Scientists still aren’t exactly sure how and why aspies process sensory information differently from typical people. The simplest explanation is that we have difficulty prioritizing incoming sensory data. For example, when a typical person walks into a strange place, they quickly and instinctively filter out the unnecessary information from the necessary. In a doctor’s office, they zero in the reception desk. In a coffee shop, their brain immediately sorts out where the ordering line is. In a busy train station, they filter out the distractions to focus on the directional signs pointing them to their platform.

If just reading about those unfamiliar situations raised your anxiety level, you’re not alone. The aspie brain takes one look at the busy train platform gives equal weight to the directional signs, the map on the wall, the crying toddler, the homeless man shaking his cup of coins, the stale underground smell,  the roar of the trains, the sound of the bathroom hand dryer, the person brushing up against you, the uneven flooring, and a million other sights, sounds, smells and physical sensations.

Like so many other things, what typical people do instinctively–filter out the sensory noise to identify the relevant inputs–the aspie brain does through a logical process of elimination. Given enough time, I can stand in the busy train station and find the correct directional signs, but it will usually take me longer than it would take most typical people.

So how does this apply to those everyday annoyances that we’re so good at ignoring? Because we seem to receive so much of our environmental data at the same “volume” level, it’s hard for any single piece of information to rise above the rest and get noticed. Typical people instinctively sort those same incoming signals by priority and the “I’m too cold” signal will get mentally red flagged. This red flag message then interrupts the part of the brain that’s engaged in work to say “hey, we’ve got a problem over here.”

The aspie brain doesn’t seem to red flag sensory input until it reaches critical levels that make it physically impossible to ignore. By that point it’s often too late, and a meltdown is imminent.

Executive Function

Unfortunately, the sensory processing issue is only half of the problem. Even when I notice that, yes, I’m too cold, I still tend to ignore that information for as long as possible. Often I’m probably investing more energy in ignoring the annoyance than it would take to get up and remedy the situation.

So it’s not that I’m not uncomfortable. I am. Just not uncomfortable enough to take action.

This is where executive function comes into play. Executive function is an umbrella term that covers things like planning, problem solving, mental flexibility, multi-tasking and initiating and monitoring actions. Poor executive function is why aspies often have trouble switching between tasks, starting and stopping activities and planning ahead. It’s also a big part of why we put up with stuff that could be easily fixed.

For an aspie, the time lag between detecting the annoyance, formulating a plan to deal with it and then taking the required action can be long or even indefinite.

What appears to be a simple problem–this thing is bothering me and I need to do something about it–has very complex neurological roots.

Yeah, I know what you’re thinking. All of this theory stuff is great, but what can I do?

You Can Do Something About That

The first step is being attentive to what your body is telling you. For me, the feeling that something is physically uncomfortable is very specific. It hovers right at the edge of my brain, like an itch that I can’t quite reach. I’ve begun to practice listening for that feeling when I’m engaged in something else.

The second step is consciously prioritizing that feeling as early as possible after you notice it occurring. For example, as I was about halfway through writing this, I started to get the itchy feeling. When I came to the end of a stream of thought I paused and disengaged my mind from writing enough to realize that the sun was shining on my laptop monitor, creating a glare.

The next step is identifying a solution. Is this a problem I can easily fix? How? In the case of the glare, I looked around and realized that there is a shade in the coffee shop window next to me and it has a pull chain that would allow me to lower it.

The final step is, of course, acting on the problem. If the solution is simple, try to act on it right away. It can be hard to stop what you’re doing to take that action, but once you do, you’ll be able to concentrate much better on your activity. I try to use that as an incentive to break away and do what I need to do. Since I pulled the shade down, I’m no longer squinting at my monitor, my face isn’t too warm from the sun and I know I won’t be leaving Starbucks with a headache.

Don’t be surprised if it takes awhile to get the hang of doing something about the little things in life that bug you. At least fifteen minutes passed between the time I started to peripherally sense that something was wrong and the time I lowered the shade.

Retraining our brains is hard work and requires some patience. Rather than feeling bad because a typical person would spend about 15 seconds on a process that took me 15 minutes, I try to focus on the fact that a year ago, I would have just kept right on typing, squinting at the glare on my monitor and feeling miserable.

Perseveration: Brought to You by the Number 2

This is what social script fail looks like:

Restaurant hostess: “How are you today?”
Me: “Two!”
Hostess: “Great!”

Once we were seated at our table, my husband waited a few minutes before gently pointing out that when the hostess asked me how I was, I replied, “Two.”

I explained that I was expecting her to ask “how many?” not “how are you?” Once I’ve loaded a social script into my brain, it can be hard to stop it from executing. Even though I heard the words “how are you,” by the time I processed the question, my brain had already pulled the trigger on “two!” and I couldn’t have stopped it if I tried.

That’s perseveration in action. The same tendency that makes aspies prone to repetitive actions and thoughts also causes the “persistence of the same verbal response regardless of the stimulus.”*

In my head I’d already rehearsed the answer to the anticipated question–the stimulus–a couple of times. When the “stimulus” changed and the actual question was different from the rehearsed question, I couldn’t shift my response to something appropriate.

Admittedly I was distracted by a conversation we’d been having on the way to the restaurant so my dependence on the script was greater than normal. I was on social script autopilot. Thankfully, the hostess was deep in her own script (Great!) so she glossed right over my reply and whisked us off to a table for two without even blinking.

And for the rest of the day, whenever I randomly blurted out “Two!” my husband replied “Great!” and then we both burst out laughing.

Every. Single. Time.

*from Mosby’s Medical dictionary

Asperger’s and Motherhood (Part 2)

This is the second in a series of posts about being a mom with Asperger’s–a combination of reflections on how my AS affected my parenting abilities and some advice that I wish someone has given me when I was struggling to make sense of being an unconventional mom. Hopefully some of what I learned the hard way will be useful to other moms in the same situation.

—–

I know I haven’t been a perfect mother but I also know that the perfect mother doesn’t exist. As moms, we do the best we can under often challenging circumstances. We each have our individual strengths and weaknesses as parents. But aspie parents have some unique strengths and weaknesses.

Everything from issues with sensory overload to problems with social interaction can affect our ability to parent effectively or even competently. In his starkly honest assessment of aspie parents, Dr. Tony Attwood lists some of the many challenges a family may face when one parent has Asperger’s: “the imposition of inflexible routines and expectations . . . the intolerance of noise, mess and any intrusion into the parent’s solitary activities, the perceived invasion of the home by the children’s friends, and a black and white analysis of people.”

These potential challenges may begin to emerge during pregnancy and quickly intensify with the arrival of the baby.

Babies are stressful. They’re unpredictable. They’re messy. They’re demanding. They don’t care if mom is sleep-deprived or suffering from sensory overload or finds breastfeeding painful or needs a couple of hours of alone time to regroup. When you throw in postpartum hormonal fluctuations and the challenges of Asperger’s, it’s no surprise that the result can be epic meltdowns more fit for a toddler than a new mother.

When Jess was a baby, there were days when I felt like I was going to lose my mind if she didn’t stop crying. I remember one day in particular when I found myself standing in the dining room, sobbing uncontrollablly and repeatedly banging my head against the wall. If you’ve ever seen an autistic child have a meltdown, it probably looked something like this. I can only imagine how terrifying this must have been for my husband–watching the mother of his child regress to that point.

But instead of losing his temper or fleeing, he was there to rescue me before I could slip too far into that abyss. He kept me tethered to reality in a concrete way that allowed me to stay connected to Jess when my natural instinct was to withdraw.

Jess at 7 months

Some Tips for New Aspie Moms

One of the keys to surviving the first months of motherhood as an aspie mom is support. All new moms need time to themselves to regroup, but for aspie moms this is especially important.

Honestly, there may be times when you feel like you can’t stand to be around your baby. He  won’t stop crying or he won’t settle down for a much anticipated nap or he’s in the mood to play when you’re exhausted. Don’t feel guilty. Needing a timeout doesn’t make you a bad mother.

It’s okay–healthy, in fact–to ask for help from a partner, relative or babysitter so you can take a short break. And if getting an hour to yourself means preventing a meltdown, that’s going to make you a better mom in the long run.

If you find your anxiety level rising at a time when you aren’t able to immediately call on one of the supportive people in your life, it may help to have some strategies you can draw on to de-escalate your stress. Many of things that babies and toddlers find calming may also be soothing for moms with Asperger’s. Here are a few options to consider:

  • A rocking chair: Lots of adult aspies still find rocking to be soothing and when you’re doing it with a baby in a rocking chair, you’ll find that no one looks at you funny. I had two rocking chairs as a kid and a comfy rocker was one the first things I put on my wish list as a mom-to-be.
  • Music: Singing to your baby, dancing around the living room with your toddler or just enjoying a favorite song together can all be soothing. For a few months as an infant, the only thing that put my daughter to sleep at night was U2’s Joshua Tree album, played at what was probably an inappropriately loud volume.
  • Water: Many aspies say that water is calming. If you have access to a swimming pool, you and your child might enjoy spending time in the water together. Once your toddler is old enough, you may find that she enjoys playing in the tub while you soak in a warm bath.
  • Pets: A dog or cat is often high on the list of expert recommendations for adult aspies. Petting, cuddling or playing quietly with the family pet can be a way to spend time with your child while you de-escalate.
  • Walking: If you have a quiet place to walk, you may find that exercise combined with fresh air and sunshine is a good way to head off a potential meltdown for you and an instant sleep-inducer for your little one.
  • Driving: The same goes for a drive along quiet roads. I remember evenings when my husband and I drove around with Jess in the back seat because it seemed like the only way to get an hour of quiet time.

Of course, there’s the toddler who screams the minute you put him in his car seat and the aspie mom who finds driving stressful rather than relaxing. Not all of the strategies that worked for me will work from everyone. Hopefully this list will be a jumping off point for you when it comes to finding “rescue” activities that you can share with your child.

Next in the series: The joys and terrors of toddlerhood

Growing Older on the Autism Spectrum

What does it mean to grow older on the spectrum?

Thanks to my Aspergarian nature, I don’t feel middle-aged but my body often tells me otherwise. My hair is going steadily gray and I’ve got the beginnings of arthritis in my hands. My joints pop and crack after I’ve been sitting too long. I’m in denial about my need for reading glasses. Pretty standard growing older stuff, whether you’re on the spectrum or not.

It’s the nonstandard stuff I’ve been . . .

. . . worrying about?

Not quite. I don’t worry about much and certainly not the distant future.

. . . afraid of?

Too strong a word.

. . . wondering about?

That sounds about right. I’m perpetually curious about all sorts of important and unimportant stuff. Before I started writing this, I searched for studies about Asperger’s and aging. Not surprisingly, I only found one and it wasn’t conclusive. (It did have one slightly alarming hypothesis about why autistic adults might not fare as well as neurotypical adults in old age. I’ve summarized it at the bottom of this piece if you’re curious.)

So, here are the things that I’m wondering about as I get older.

1. I wonder if I’ll be able to avoid a serious fall when I’m less physically resilient. I have a tendency to trip, fall and bump into things. No matter how vigilant I am, it happens. In the past month I’ve taken a couple of dives, one while running on a country road and one on the slippery locker room floor after swimming. The first got me a nasty case of road rash and the second resulted in a sore shoulder–relatively minor injuries considering how hard I went crashing to the ground both times. I doubt that will be the case if I take a similar fall a couple of decades from now.

2. I wonder if the recent decline in mental endurance is the beginning of a downward trajectory that will eventually limit my capacity to concentrate or work as I get older. Since hitting my forties, I’ve noticed that I tire more quickly during tasks requiring intense concentration. Powering through is no longer as appealing or even as feasible as it was 10 years ago. To compensate, I’ve been taking more breaks during the work day and giving myself permission to rest when I need to. I set smaller goals and reward myself for reaching them. I try not to have unrealistic expectations of what I can accomplish in a day.

3. I wonder if my decreasing willingness to endure things for the sake of pleasing people will turn into a liability. So far it’s been a positive development–increasingly allowing me to say no when I want or need to–but I can see how, if I’m not careful, I might wake one day to find I’ve become a crazy old cat lady.

4. I wonder if I’ll be able to keep up my exercise routine. Exercise keeps me sane. I need to run or swim regularly to burn off my excess energy and generate the cocktail of good chemicals that balance my brain. I figure this should be possible at least into my sixties, assuming I don’t seriously hurt myself first (see #1).

5. I wonder what life will be like if my husband dies before me. I enjoy his company in a way that I don’t enjoy being with anyone else. He and my daughter are the only two people I feel truly comfortable being around. I can’t imagine wanting to meet someone else. I’ve never lived alone. Whenever I read a new story about a married couple who’ve died together–in a plane crash or some other horrible accident–my first thought is always how lucky they were to have passed away together and avoided being widowed.

Wow, where to go from there? How about some positives?

As I get older, I’m softening up. I’m more patient with myself, more accepting of my faults, more compassionate. I’m less concerned with pleasing others, less worried about being accepted or thought of as “normal”.

Since learning about my Asperger’s, I feel like I’m actively healing the scared little kid that I was and integrating the fragmented parts of my self. I don’t think this would have been possible in my twenties or thirties.

In a lot of ways, I feel like time is my ally. I still have a lot of it left and I’m determined to make the best of it.

Geek Alert: What the Science Says about Aging on the Spectrum

A search for some scientific background about aging and autism turned up only one study, which evaluated people over 60 with autism (mostly with Asperger’s Syndrome) against similar age controls on a variety of cognitive domains. The results were mixed, but the researchers threw out an interesting hypothesis in their discussion. Adults (and adolescents) with ASD tend to use more and larger areas of their brain than neurotypical adults when performing certain cognitive (executive function) tasks. As we age, the NT brain makes a similar adaptation so that elderly NTs also use more and larger parts of their brain to compensate for the degeneration of the brain associated with aging.

The researchers suggested that a faster decline in certain cognitive areas among elderly people with ASD might be a result of the brain’s inability to recruit additional areas for cognitive processing, since this was adaptation that they’d already made earlier in life. On the positive side, there were some areas where adults with ASD performed better than controls. Obviously this is only one study with a relatively small sample size so it what it can tell us about aging on the spectrum is limited. Either way, I suspect we can learn more by listening to older adults on the spectrum than by cognitive testing in the lab. If you’re an autistic person in your fifties or sixties or older, I would love to hear from you in the comments.

When Your Diploma Comes with a Diagnosis

My college diploma arrived today:

So official looking!

It feels good to check “college graduate” off my list of Important Life Accomplishments, but I got something far more important out of college than a degree.

I got Asperger’s Syndrome.

Not literally, of course. I was born with Asperger’s, but I managed to get through more than four decades of my life without knowing it. The process of attending classes made me realize how different I am from most people. Until I ventured out onto campus, I’d carefully structured my life in a way that let me avoid having to face my differences too often or too blatantly.

I’ve been my own boss since I was 19, which has allowed me to decide who I work with and how. I make the rules. I decide what’s acceptable workplace behavior. Walking around in my socks? Yes! Bringing my dog to work? Why not? Eating lunch in my office with the door closed? Totally normal.

By ensuring that I was the one making the rules, I wrapped myself in a cocoon of relative safety. If I didn’t want to do something, I delegated it, hired someone to do it, or avoided it.

Taking classes at a university forced me to follow someone else’s rules if I wanted to succeed. I was judged on not only my academic work but my communication skills. My ideas were subject to scrutiny. I had to make presentations and work in teams. There was no locked door to hide behind while I ate lunch.

This was a lot to put up with. On the other hand, I really wanted to get a degree, to prove that I might be a little late, but I could make it through college.

I did my best to fit in where I could. When things got rough, I sucked it up and muddled through, telling myself that as a ‘returning student’, most of the young people in my class were going to look at me funny anyhow.

It’s hard to say when I went from thinking “I’m a little odd” to “maybe there’s something systemically different about me.” The process was a lot like putting together a puzzle–connecting pieces here and there, assembling bits of the scene but not being able to see the whole picture until dozens of those little connections are made.

A few of the key puzzle pieces:

  • The sociology class assignment that asked me to describe a time when someone’s body language didn’t match their words. My initial response: What body language? When we shared our answers in class, I discovered how unusual it is to not instinctively notice body language.
  • The way professors so often asked me if I had a question or looked at me while asking something like is everyone following what I’m saying? I didn’t know it at the time, but I often frown (a sign of confusion) when I’m concentrating.
  • The universal look of surprise I got from professors after the first test or paper was graded. I rarely speak in class and when I do, it’s a crapshoot whether I’ll completely misinterpret a question, give an off-the-wall response or get the right answer. But write a 30-page paper about the economic impacts of environmental regulation? Yeah, I’m all over that.

Everything Becomes Illuminated on  a Random Winter Day

It wasn’t until I came across a feature story on Asperger’s Syndrome last winter that the puzzle pieces started to reveal the bigger picture. While I’d heard of Asperger’s, I’d never considered that it might be something that applied to me. Sure I could see myself in the some of the symptoms, but who didn’t? It was easy to explain away the similarities.

I’d told myself that having Asperger’s was similar to being shy–like a really bad case of shyness–which made it easy to write off. I wasn’t that shy was I? I had a job, a child, a husband. I interacted with people when necessary.

I carefully avoided the qualifiers. I had a job that I’d structured around all of my little neuroses. I had a child to whom I’d stopped saying the words “I love you” as soon as she was old enough to talk. I had a husband who was growing increasingly frustrated with my often cold, controlling behavior. I interacted with people when necessary and no more.

There is a certain element of good fortune that allowed me to get away with all of the hacks and workarounds I’d devised to compensate for my deficits. Through a combination of luck and a willingness to take risks that a lot people wouldn’t, I’d managed to create an environment that capitalized on what I could do and masked all of the things I couldn’t do.

Being in school upset the delicate balance I’d worked so hard to cobble together and suddenly it became hard to avoid the qualifiers.

When I read that feature story, I felt like the writer was talking about me. Not about someone like me, about me. I don’t know what made that story different from the others I’d read about Asperger’s (and there had been many–my fascination with AS alone should have been a big red flag that my subconscious was trying to tell me something).

Maybe I was finally ready to see the big picture and I’d assembled enough of the little clusters of puzzle pieces to make that possible. Whatever the cause, the result was a feeling of lightness–like Asperger’s Syndrome was this giant bucket that would hold all of the things about myself that I’d found confusing and painful and shameful and frustrating and hard. Maybe putting those things in the bucket would mean that I wouldn’t have to juggle them anymore.

Intrigued, I did some more reading and it quickly became obvious that Asperger’s is more than a collection of social and communication problems.

There were dozens of little tells that were undeniably me and had nothing to do with being shy or introverted. The way I often talk too loudly or too quietly. The intense interests in unusual topics. My blunt honesty. My heavy dependence on lists and routines. The way I don’t recognize people “out of context.” My discomfort with compliments. The list was long enough for me to finally admit that it might be a good idea to get evaluated.

As hard as that admission was, once it became clear that I have Asperger’s, my first reaction was relief. It explained so much about my life that I’d thought was my fault–for not trying hard enough or being good enough. It wasn’t an excuse but it was a hell of a good explanation.

Armed with that explanation, I’ve immersed myself in learning more about how my brain works and how that impacts my life. As I’ve learned more about Asperger’s and about myself, the initial relief has given way to a rollercoaster of emotions: anger, grief, resentment, fear, surprise, confusion, acceptance, joy, optimism and increasingly a deep, liberating sense of quiet.

So yeah, the diploma is nice, but what came with it–the knowledge that I have Asperger’s Syndrome–is something that’s changed my life.

Asperger’s and Motherhood (Part 1)

This is the first in a series about being a mom with Asperger’s Syndrome–a combination of reflections on how Asperger’s affected my parenting experience and advice that I wish someone has given me as I was struggled to make sense of being an unconventional mom. Hopefully some of what I learned along the way will be useful to other moms (or dads) with Asperger’s.

——

If you’re the mother of a child with Asperger’s syndrome, you can find parenting advice to help you navigate every stage of your child’s life.

If you’re a mother with Asperger’s syndrome? Well, good luck with that.

By the time I discovered that I have Asperger’s, I was already the mother of an adult daughter–a fairly well-adjusted, successful adult daughter. Ha! I thought smugly. I might be defective but I’d raised a perfectly normal child.*

When I told my daughter Jess that I have Asperger’s, she laughed it off at first, like maybe I just needed to be talked out of this crazy idea that there was something wrong with me. I’d always been different from other moms. We both knew that. But the idea that I might be autistic was, understandably, a lot to process.

As I explained more about what AS is and described some of the common aspie traits, she started coming up with specific examples of times when I’d done something particularly autistic. Some were funny, others less so.

The more we talked about it, the more relieved she sounded. An AS diagnosis can explain a lot of puzzling behavior, for both the aspie and the people closest to her.

As one point in the conversation, she said, “But you’re so smart!”

Armed with the reading I’d done, I explained the gap between intellectual intelligence and emotional intelligence that a lot of us with AS experience.

She was quiet for a moment. I’m sure that among other things she was puzzled over why I was so excited to be telling her that I have a developmental disorder. It doesn’t sound like a cause for celebration, but I was still in the early flush of discovery. Suddenly so much of my life made sense. I felt like someone had finally given me the user’s manual to my brain.

I hadn’t yet realized how little I knew about AS or myself. I hadn’t yet realized that the owner’s manual was missing a few key pages.

The next question Jess asked made that clear. “So, wait, does that mean you don’t have feelings?”

When a stranger or acquaintance asks this, it’s easy to attribute it to ignorance. One of the most common misconceptions about people with AS is that they’re cold and emotionless. But when your own child asks you if you have feelings, well, that’s one of those times when the reality of AS hits and hits hard.

That’s when twenty-four years of not saying “I love you”–twenty-four years of struggling to express my feelings to my own child–crystallized into one perfect moment of regret, of wishing I’d known all along that there was a reason for how difficult I find it to express what I’m feeling. Because the feelings are there. They may not be quite what the typical mom feels, but I’m absolutely certain that I love my daughter. And I want her to be absolutely certain too.

—–

*While I would phrase this differently now (substituting different words for “normal” and “defective”) I chose not to revise my original thoughts because they reflect how I honestly felt in those early moments, when I was still learning about Asperger’s Syndrome.

—–

Next in the Series:  The challenges of caring for an infant when you can barely take care of yourself .  . .

one woman's thoughts about life on the spectrum