Monthly Archives: November 2012

Growing Up Aspie, Health, Sensory Processing

Wide Awake: Autism, Insomnia and Me

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Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.

Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.

In more technical terms, I have classic signs of autism-related insomnia:

  • prolonged sleep latency (time to fall asleep)
  • reduced sleep efficiency (decreased time asleep/time in bed)
  • reduced total sleep time
  • reduced sleep duration and continuity
  • night awakening exemplified by of long periods of time awake1

I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.2 When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.

What my clock read this morning when I woke up.

A Budding Insomniac

My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.

I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.

I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.

When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.

My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.

Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.

What Works for Me

As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:

1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.

2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.

3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.

4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.

5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.

6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.

7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.

8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.

9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed

Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.

Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.

(Unless you’re a geek like me, you can safely stop reading here.)

A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up

There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.2 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.

Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.3 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.

Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.

Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system4:

From “Exercise and melatonin in humans: reciprocal benefits” in Journal of Pineal Research by Escames et al.

The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!

Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.

The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.

It doesn’t always work but I have a feeling things could be a lot worse.

References:

1Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.

2Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.

3Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.

4Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x

Asperger's Tests

Taking the Autism Spectrum Quotient (AQ) Test

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This week for Take-a-Test Tuesday, I took the Autism Spectrum Quotient (AQ) test. The AQ is used as a clinical screening instrument so in addition to taking the test, I read two of the studies that have been done to validate it. The write up that resulted is rather geeky.

The Autism-Spectrum Quotient (AQ) was developed by the Autism Research Centre at the University of Cambridge and first published in 2001. While the test has “Autism Spectrum” in its title, it’s geared toward identifying adults with Asperger’s Syndrome. It has been tested on adults with normal intelligence who had been diagnosed with AS or HFA*. While the AQ isn’t considered a diagnostic instrument, the 2005 study referenced later in this post did recommend that it be used by family doctors/general practitioners to determine whether to refer an adult patient for an in-depth Asperger’s Syndrome evaluation.

The AQ is composed of 50 short questions, 10 each on:

  • social skills
  • attention switching
  • attention to detail
  • communication
  • imagination

The 2001 study that was used to develop the AQ has some interesting data about the validity of the individual questions. If you’ve always disagreed with the idea that autistics lack imagination or can’t see the point of “the phone number question” on the AQ, you might find the individual item analysis revealing. Go take a look for yourself (Table IV, especially items 3, 8, and 29).

I’ll spare everyone else the gruesome details.

Pros and Cons of the AQ

Pros:

  • Short, can be taken quickly
  • Self-scoring
  • Includes questions phrased as both preferences and perceived competencies
  • Clinically tested (statistical data available on sensitivity, specificity, test-retest reliability, internal consistency, etc.)
  • Adult, adolescent and child versions are available

Cons:

  • Possible gender bias
  • Single score outcome
  • Choice of questions may be biased toward creator’s theory of autism
  • No subscale scores
  • Uncertainty regarding what a mid-range score might mean due to multiple recommended cutoff scores

Taking the Test

There are many places that you can take the test online. I took it at Wired.com. To get started, read the questions and choose one of the four answers for each. Don’t spend too much time agonizing over the slightly or definitely wording. The scoring is based on your choice of agree or disagree with no weight given to how strongly you feel it.

When you’ve answered all of the questions, click the “Calculate Score” button to get your AQ score. You’ll see your score on the next page along with a list of which items you scored positively on. Each positive item (i.e. item that indicates an autistic trait) equals one point, so a higher score indicates the presence of more autistic traits.

Scoring the Test

The possible scoring range is 0-50. The 2001 study found that 80% of people with Asperger’s who took the test scored 32 or higher. A subsequent 2005 study proposed a cutoff score of 26 be used when screening adults for Asperger’s in a clinical setting. The second study found that of 100 people who completed the AQ, the test correctly classified 83% of them as having Asperger’s or not. The 2005 study states that using the higher score of 32 as the cutoff would minimize false positives, so there really isn’t a clear consensus on how useful the midrange scores are.

Here is a graph comparing the scores of people with Asperger’s to the scores of neurotypical controls in the 2001 study:

From “The Autism-Spectrum Quotient (AQ): Evidence from Asperger Syndrome/High-Functioning Autism, Males and Females, Scientists and Mathematicians” by S. Baron-Cohen et. al.

The graph shows a fairly clear difference in the distribution of scores between those with Asperger’s/HFA and the control group. However, it also shows some overlap in the middle of the scoring range. Some people who were clinically diagnosed with Asperger’s/HFA scored in the teens, well below the cutoff of 32, and some neurotypical people scored in the thirties.

The original study also has some interesting outcomes for gender. In the AS/HFA group, the mean score for women was higher than for men, while in the control group, the reverse was true. In fact, the mean score for women with Asperger’s was 38.1 (vs. 35.1 for males) while not a single woman in the control group scored above 33 (highest score for male controls was 37).

Oh yeah, my score was 41.

The Bottom Line

Unless you score at one extreme or the other, you may find this test raises more questions for you than it answers.

————-

*I used HFA (High Functioning Autism) throughout this post because it was used in the 2001 study to describe the diagnosis of some of the study participants.

Health

Nightmares: An Experiment in Anxiety Management

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Warning: This contains some nongraphic descriptions of violent/disturbing nightmares. 

I have a lot of nightmares. If the statistics at WebMD are correct, I fall into the 2-8% of the adult population that has nightmares more than once a month. I’d love to know the percentage of people who have nightmares more than once a week. I bet that would make me feel really special.

Lately, though, I’m getting fed up with the nightmares. I’m ready to get myself into the 90+ percent of people who don’t regularly dream about being chased and assaulted.

Locating the Source of the Problem

Recently I began to suspect that my nightmares were related to my Asperger’s. Since finding out that I’m an aspie, this has been my default explanation for anything out of the ordinary.

Some digging through the PubMed database failed to turn up any research strongly linking nightmares and autism. Autistic kids are known to have a very high incidence of sleep disorders (look for a separate post on this next week). Some studies reported that as many as 80% of children with ASD have some form of insomnia. But nightmares haven’t been strongly linked to autism in children and, not surprisingly, there were no studies on sleep disorders in autistic adults.

My next stop was Google. If Asperger’s wasn’t to blame, I needed to find a likely suspect, and where better to hunt for clues than the internet, right?

Visits to WebMD and the International Association for the Study of Dreams turned up good background information about adult nightmares. I scanned through the common causes: medication or withdrawal from medication/alcohol, late-night snacking (because it increases metabolism), a traumatic event, PTSD, anxiety, stress, depression.

Aha! There it was. Anxiety. Asperger’s was to blame after all.

Sort of.

Connecting the Dots

Since I’ve been paying closer attention, I’ve noticed that my nightmares fall into two categories: violent or rage-filled.

The violent nightmares are closer to what most people think of when they think nightmare: being chased, being attacked, being seriously injured. The threatening person (or people) is always a stranger. The dreams used to end in me being seriously injured or nearly dying. A few years ago they shifted. Now the violent dreams almost always end with me seriously injuring or killing the attacker(s). If this sounds like an improvement, trust me, it’s not.

The rage-filled nightmares are characterized by me getting extremely angry with someone I know and blowing up at them. I’m not the kind of person who screams and rages at people in my waking life, so doing it in a dream is strange and disturbing. The rage feels uncontrollable and far more extreme than anything I’ve ever experienced in a sustained way while awake. It feels like I’ve snapped.

This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 2.5 License.

Over time, I’ve noticed a pattern in when I have nightmares. I can go weeks without a bad dream and then I’ll have a string of nights filled with long vivid nightmares.

The trigger for each of the types is specific, too. The violent nightmares usually follow a day where I’ve had a frustrating social encounter with a stranger or acquaintance–something that’s left me feeling tongue-tied, inadequate or embarrassed. The rage-filled nightmares usually follow an unpleasant interaction with someone I know. Often that person will be the target of the rage in the dream.

Armed with this analysis, I went off in search of remedies.

A Possible Solution

One of the most common suggestions I found for reducing nightmares was journaling. I’ve tried journaling in the past, unsuccessfully, because part of my brain spends the whole time going “why are we writing this if no one is going to read it?” But the underlying principle of using journaling to process my anxiety makes sense.

My hypothesis about my nightmares: When a trigger event occurs, I’m not processing the feelings associated with it. The lack of processing in my conscious mind is forcing my subconscious to process the feelings, resulting in the unpleasant dreams.

So here is my Aspergarian solution: a spreadsheet. I’m going to track suspected trigger events and nightmares–along with a couple of other variables, like hormonal fluctuations–to see if there’s any relationship between the two.

Ideally, I’d also like to recognize triggering events and try to conscious process the feelings associated with them, no matter how unpleasant that might be. Avoiding them obviously isn’t working. Maybe making a deliberate attempt to look at the triggering situation, acknowledge what I’m feeling and then tell myself that it’s okay to feel that way will diffuse the power of the triggering events and lessen the frequency of the nightmares.

I’ll be back in a few months with a post about how this works.

Asperger's Tests

Taking The Aspie Quiz

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There are quite a few online Asperger’s Syndrome tests. I thought it might be fun to take each of them and then do a little write up.

So, welcome to “Take a Test Tuesday,” a new series that will go on for as many weeks as I can continue digging up new tests to take.

I’m going to kick it off with my favorite online Asperger’s test, The Aspie Quiz, but first a few words about online tests in general. Although some of the tests you’ll find on the internet are used as part of a diagnostic battery, it’s important to remember than an official diagnosis includes additional elements such as neuropsychological testing, observation by a psychiatrist, an assessment of childhood development and interviews with family members.

While you can take these quizzes and get a result that says you’re “most likely an aspie,” they aren’t diagnostic instruments. A formal diagnosis can only be made by a qualified doctor.

With that in mind, let’s get started.

The Aspie Quiz

The Aspie Quiz was developed by Rdos. It’s been through many revisions over the years, with the addition and subtraction of questions based on, among other things, how well the questions correlate with the answers of diagnosed individuals. If you’re interested in statistics or how tests like this are developed, you’ll love the Aspie Quiz Evaluation page. It has a wealth of information on the rationale for which questions have been included or dropped as well as the correlation between quiz scores and various diagnoses.

The Aspie Quiz is not used in any official diagnostic capacity and is billed as a test to be taken for fun, but you’ll often find aspies quoting their scores in their signatures at places like Wrong Planet. Rdos has also written about how the Aspie Quiz compares to the Autism-Spectrum Quotient (AQ) test, which has high validity as a diagnostic instrument.

The Aspie Quiz is made up of 150 questions that fall into six domains: talent, compulsion, social, perception, communication and hunting. That last category isn’t one you’ll see on any other Asperger’s test. There is a short explanation about the “hunting” questions in the detailed quiz results, tying the questions to cooperative vs. passive hunting traits. However, the explanation also states that the hunting questions have no “diagnostic relation.” The other five domains cover topics more commonly thought of as differentiating aspies from NTs, such as special interests, adherence to routine, and social preferences.

Pros and Cons of the Aspie Quiz

Pros

  • Very detailed
  • Self-scoring
  • A wide range of question types
  • Extensive statistical data available online
  • Results include both Aspie and NT scoring scales
  • Detailed scores in 12 subscales, including scoring rationale
  • Commonly referred to in online Asperger’s communities
  • Visual, quantitative and qualitative results

Cons

  • Longer than most online Asperger’s tests
  • Has not been independently validated in a clinical setting
  • May be biased toward the developer’s own theory of Asperger’s
  • Not officially recognized by medical establishment

Taking the Test

To take the test, begin here. You don’t need to register if you prefer not to. Just click the “I accept” button. On the next screen you’ll see some questions that the developer is using to validate the test items. Select the appropriate answers and click the “Go to Quiz” button to begin the quiz.

There are a lot of questions, but they’re fairly straightforward. It took me about 20 minutes to complete the quiz. Once you submit your answers, you’ll get a basic results page with your Aspie and NT scores as well as a graphical spiderweb representation of your subscale scores.

You can click the “Detailed results suitable for printing (PDF)” link to get a PDF file with your aspie and NT scores, your spiderweb, and a detailed explanation of your scores on the various subscales.

Scoring the Test

You’ll get two scores: ____ out of a possible 200 for the Aspie score and ____ out of a possible 200 for the neurotypical score. The Aspie score tells you how high you scored on items indicative of Asperger’s traits. The neurotypical score tells you how high you scored on items that describe common non-autistic (neurotypical) traits. Based on the combination of the two scores, the final line of the results will state that you’re “likely an aspie” or “likely neurotypical” or that you “have aspie traits and neurotypical traits.”

Here are my scores:

  • Your Aspie score: 170 of 200
  • Your neurotypical (non-autistic) score: 32 of 200
  • You are very likely an Aspie

For comparison, I asked The Scientist, who is neurotypical, to take the quiz. He generously agreed to let me use his results. Here they are:

  • Your Aspie score: 85 of 200
  • Your neurotypical (non-autistic) score: 158 of 200
  • You are very likely neurotypical

Finally, our adult daughter volunteered to share her results as well:

  • Your Aspie score: 77 of 200
  • Your neurotypical (non-autistic) score: 143 of 200
  • You are very likely neurotypical

As you can see, I scored much higher on the aspie items and much lower on the NT items, while The Scientist and our daugther scored quite high on the neurotypical items and lower on the aspie items. I find it interesting that my scores are more widely distributed than theirs.

Obviously there are questions on the Aspie Quiz that are aspie indicators but will be answered positively by NTs. For example, when The Scientist is interested in something, he gets deeply absorbed in it, much like an aspie with a special interest. The same will be true of aspies having some qualities that are more commonly associated with NTs.

The distribution of scores between aspie and NT becomes most obvious when you look at the spiderwebs.

Mine:

My spiderweb results (The Aspie Quiz)

The Scientist’s:

The Scientist’s spiderweb results (The Aspie Quiz)

Our daughter’s:

Our daughter's spiderweb (The Aspie Quiz)
Our daughter’s spiderweb results (The Aspie Quiz)

My high scores fall almost exclusively on the aspie (right) side of the web and my NT family members’ are weighted toward the NT (left) side of the web, with some moderate scores on the aspie side as well.

The Bottom Line

While the Aspie Quiz isn’t an officially recognized test, it does seem to be an accurate reflection of neurotype and you get a pretty picture when you’re done.

Aspie Life

I Can, But I Won’t

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In Ten Things Every Child with Autism Wishes You Knew, Ellen Notbohm talks a great deal about the difference between “can’t” and “won’t.”  Often for children on the spectrum, behaviors that appear defiant are actually a result of the child’s developmental deficits. It’s not that Johnny doesn’t want to clean up his toys and get ready for bed. He literally has no idea where to begin so he does nothing.

Understanding the difference between can’t and won’t feels huge to me as an adult. So much of what I struggled with as a child was treated by the adults in my life as a simple refusal to try. I was endlessly prodded to do things like have more friends and participate in class. While my parents and teachers seemed to think I just wasn’t trying hard enough–after all I was a smart, likeable little girl–to me it felt like I was making a superhuman effort.

Raising my hand to answer a question in school required overcoming all sorts of fears: the fear of being wrong, of being ignored, of being teased, of not being understood or heard, of being asked a follow-up question that I didn’t understand or couldn’t answer.


I learned early on that there were many things that could go wrong and only one scenario in which everything went right. Those odds weren’t exactly encouraging.

Like so much of what I struggled with as a kid, I’m not sure whether this was a case of can’t or won’t. There were certainly elements of can’t–particularly when it came to being able to express my thoughts clearly and respond spontaneously to follow-up questions. But there was a large measure of won’t born from the can’t.

If you fail enough times, it’s inevitable that trying becomes too costly.

As an adult, I don’t think there is anything I can’t do because of my Asperger’s. I’ve learned enough hacks and workarounds to navigate life on a daily basis.

Won’t is another story.

The older I get, the more resistant I’ve become to activities that are going to have a high emotional cost. There is a long list of things that I don’t want to do–that I won’t do–even if I can.

Notbohm defines can’t as a lack of knowledge, ability and opportunity. Won’t, she says, is about backing away from difficulty and challenge.


Middle age has become the season of won’t for me. I can go to every social event that my husband gets an invite to, but I won’t. I can seek out more opportunities to practice social skills, but I won’t.  I can try to make friends, but I won’t.

The gulf between having the ability to do something and wanting to do it has widened as I’ve grown older. I no longer see as much value in toughing something out. I’m no longer as eager to grit my teeth and just get through an event. My desire to fit in lessens with every passing year.

I’m sure there are people who would tell me this is unhealthy and limiting. It may be, in the sense that I’m missing out on potentially enriching experiences. Perhaps at some point I’ll find some of those experiences attractive enough that I’ll want to give them a try. My won’t list isn’t set in stone.

But right now I’m at a point in my life where I’m not interested in enrichment so much as peace. There are days, a lot of days, when I’m content just to be left alone, to not have to deal with the confusing muddle of social interaction that is constantly scratching at the door to my mind.

As I grow older, I find myself becoming more and more okay with my list of won’ts. They no longer feel like the failures they once did.

In fact, it’s no longer a matter of everything coming down to  the deficit-based can’t versus the failure-to-try-based won’t, as Notbohm frames the childhood paradigm. As autistic adults, we have the option to step beyond the deficit/failure-to-try model and simply decide that there are things we prefer not to do, just like everyone else.

Growing Up Aspie, Social Skills

The Athletic Aspie. No, really.

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Aspies are notoriously unathletic. We tend to be clumsy and uncoordinated. Chalk it up to a motor planning deficit, poor executive function, proprioception difficulties, dyspraxia, or all of the above. Whatever the cause, the result is that we’re more likely to be branded a geek than a jock.

Unfortunately, I never got the memo on this. All my life I’ve loved sports and being physically active. Loving sports, in my case, isn’t the same as being good at sports, but I’ve never let that stop me.

Though my parents didn’t know I had Asperger’s they did know that I was clumsy. One of their nicknames for me was “Grace”–as in, “careful there, Grace” and “that’s our daughter, Grace.” I think this is funnier when you’re the one saying it than when you’re the one tripping over an inanimate object.

Perhaps in an effort to help me overcome my lack of coordination, they signed me up for a lot of individual sports: dance, gymnastics, bowling, golf, diving, swimming, karate.

Most of these were activities that I could do with other kids but didn’t require the type of interaction that team sports do. I was on a bowling “team.” All that meant was that I took turns with four other kids. The bowling itself was an individual pursuit. Other kids took a turn. I took a turn. I got to add up the scores. I wandered off to watch one of the arcade games. Someone called me back when it was my turn. It was great.

Golf and dance and karate were the same. I did these things alongside other kids but not really with them. There was an appearance of social interaction. The actual amount of interacting I did was minimal and that was fine.

I’ve always loved individual sports for exactly this reason. I learned to swim soon after I learned to walk. My family had a swimming pool in the backyard so I was in the water months after being born and enrolled in swim lessons as soon as the YMCA would take me. Swimming is still one of my favorite ways to relax. I love being in the water–the sensation of weightlessness, of gliding, of floating, of being surrounded and suspended–and I love the rhythmic movement and sensory deprivation of a long swim.

My YMCA Minnow patch – one of the few things I’ve saved from childhood.

As an adult I took up running. Like swimming, I enjoy the rhythm of running. I also like the way it gets me out into the quieter places–trails through the woods, quiet paths along the river, a beaten single track frequented more by deer than humans. I loved long bike rides as a kid for the same reasons.

The Beauty of Individual Sports

I tried team sports. In middle school, I was on the school softball and basketball teams. It was fun but I wasn’t very good at it and spent most of my time sitting on the bench during games. I also got razzed a lot by coaches for not making enough effort. My basketball coach was always yelling at me to be “more aggressive” but I had no idea what she meant.

There was a lot about basketball that I didn’t quite get. Team sports have many variables–the rules, the other team members, the fast pace, the ball (inevitably there’s a ball involved).  For the typical aspie, this is a lot to manage. By the time I got to high school, I knew that team sports weren’t for me.

But individual sports! This where aspies can shine. When I’m out on the trails or in the pool, I feel strong and athletic. I feel like I’m coordinated and connected to my body. I feel like I’m good at a sport! Forgive my exclamation points, but this is exciting for someone who grew up feeling clumsy.

So, let me sell you on the wonders of individual sports for aspies of all ages:

1. You can progress at your own pace. Individual sports allow you to measure your progress against yourself. While you might compete against others, most individual sports also encourage “personal bests.” Running a new best time for a mile or swimming a personal best for a 400 is as fulfilling as beating an opponent. Maybe more so, because it’s an indication that your practice is paying off and you’re better at your sport than you were a month ago or a year ago.

2. You can be part of a team without the pressures of a team sport. Individual sports can be less stressful than team sports when it comes to having to perform well every time. If you have a bad day as a team player, your actions can impact the whole team. If you have a bad day as a cross country runner, you might not place well, but one of your fellow runners could still win the race. There are team consequences, but they tend to be less severe.

3. You can practice by yourself. This is a huge advantage for aspies. Because of our motor coordination issues, we might need a lot more practice than the average person to learn or master a skill. When that skill is something that doesn’t require a team or a partner to practice, we can spend hours working on it alone, at our own pace.

4. You play side-by-side with others. Team sports put a big emphasis on bonding with other team members, which can be stressful for aspies. Individual sports allow you to play alongside others, interacting as much or as little as you feel comfortable.

5. Individual sports tend to be rhythmic, repetitive and predictable. And what do aspies like more than rhythmic, repetitive, predictable movement? Running, cycling and swimming are like large-scale, socially acceptable stims. And you can do them for as long as you like. The more, the better!

6. Individual sports can burn off a lot of excess energy. Many individual sports are endurance based, making them an ideal way to tire out a high-energy aspie. Even moderately vigorous physical activity will burn off excess energy and trigger the release of endorphins, which not only improve your mood but can reduce anxiety and help you sleep better.

7. Individual sports improve coordination. All sports improve coordination, but individual sports tend to be more “whole body” sports, requiring you to integrate all of the parts of your body to achieve the best possible result. Think of the type of movement required for swimming breaststroke versus the type of movement required for playing shortstop.

Why Exercise is an Essential Part of Managing My Asperger’s

I need to get in at least an hour of running, swimming or walking every day. I need to exercise every morning. When I say need, I’m not kidding. If I didn’t exercise religiously, I would likely be on medication for both anxiety and depression.

Hard physical activity burns up the unwanted chemicals in my body and generates a nice steady flow of good chemicals. Exercise takes the edge off my aspie tendencies and leaves me feeling pleasantly mellow.  If my physical activity level falls for a few days in a row, I start feeling miserable. I get short-tempered, cranky and depressed. I lose my emotional balance. I don’t sleep as well. I find it harder to focus.

Being physically active also keeps me connected to my body. I have a tendency to retreat into myself and become disconnected from everything that isn’t inside my head. I’m also still–in spite of decades of sports practice–more clumsy and uncoordinated than the average adult. Being physically active helps me combat this and makes me more physically resilient when I do take an expected tumble.

A Little Different Spin on Physical Activity

One of my favorite bloggers, Annabelle Listic, has written a wonderful post–Kinect with Me!–about how she is using the physical activity of gaming to address some of her concerns (which are different from mine). I’ve never played a video game that requires physical interaction but her post got me thinking that this type of gaming might have many of the same benefits as participating in an individual sport.

Aspergers Marriage

Lessons from an Aspergers-NT Marriage (Part 4)

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This is the last post in series about the lessons my husband (NT) and I (aspie) have learned during the 25 years we’ve been married.

Learn how to recognize your partner’s expressions of love

Aspies and NTs speak completely different languages when it comes to expressions of love. You can either learn to translate your partner’s “love language” or you can spend the rest of your marriage wondering if this person you’re sleeping next to every night really, actually loves you.

How does this translation work? Like this:

The Scientist: “You don’t have to make my lunch every morning. I can pick something up in the cafeteria.”

Me: “I don’t mind. It only takes a few minutes and I know you’d rather have something healthy to eat. This way you don’t have to waste time waiting in line.”

The Scientist: “So you mean you make my lunch because you care about me, right?”

Exactly.

Learning how to translate the ways your partner thinks about love and intimacy can be challenging in an aspie-NT relationship.                                                                 Image via creative commons license from the Flickr photostream of DailyPic.

Accept that there are things you’ll never understand about your partner

No matter how long you live together or how much you love each other, there will be moments when you feel like your partner is the most incomprehensible person on Earth. The aspie and NT brains have key differences. The sooner you accept this, the less frustrated you’ll be when your partner does something that leaves you scratching your head.

There have been many times when The Scientist has given up on a conversation with the words, “I just don’t understand you.” It’s not that he isn’t trying. He’ll ask me lots of questions to try to zero  in on an explanation for something I’ve done or said. He’ll wait semi-patiently while I sit mutely and stare off into the distance, unable to put words to what I’m feeling. He’ll repeat things back to me to see if he’s hearing me correctly. But no matter how many different ways I explain it, it still doesn’t make sense to him because we’re both starting from fundamentally different places.

This goes both ways. The day The Scientist told me that he feels something–a physical sensation of warmth was how he described it–when he says, “I love you” I was stunned. I tell him that I love him every day but I’ve never associated a physical feeling with those words.

I can logically understand what this physical feeling might be like, but I’ll probably never know exactly what he feels. By the same token, I can tell him that when I sit in a crowded restaurant, my brain is tracking the conversations at all of the tables within earshot, but I don’t think he can ever replicate that experience in his own head.

We can make educated guesses at what’s going on inside the head of our partner, but there will always be some experiences that we can’t truly understand.

Have realistic expectations but don’t stop trying to grow and improve your relationship.

When faced with the day-to-day challenges of an aspie-NT marriage, it would be easy for both partners to simply give up in frustration. I can think of plenty of times when walking away would have been easier and less painful than trying to work things out.

Balancing realistic expectations–by both partners–with a concerted effort to improve can be a relationship-saver. Realistic expectations go both ways. The NT partner shouldn’t expect the aspie partner to morph into a typical person overnight. (The Scientist says he wouldn’t want this even it were possible.)

By the same token, the aspie partner shouldn’t expect the NT partner to simply put up with an endless barrage of unchecked aspie behavior. Knowing what can be changed and what can be tolerated is essential.

The second part of this equation is one that might draw some heat from aspies. I’m a firm believer in trying to improve my ability to function in an NT world. Before anyone jumps down my throat about the potential evils of assimilating, let me explain.

The day I explained to my husband about my Asperger’s, one of the first things he said was, “I love you exactly the way you are.” I treasure that and I know it’s not something he said just to make me feel better. He means it. But I also know that I’m hard to live with. I find myself hard to live with at times. So when I say I want to improve my level of functioning, it’s because I want to struggle less on a daily basis and because I want the people around me–the people I love–to struggle less. It has nothing to do with conforming to the expectations of an NT world and everything to do with making life less stressful and more enjoyable for myself and my family.

Aspie Traits

Autism is My Special Interest

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Before I started reading about Asperger’s Syndrome, I had no idea what a special interest was, even though I’ve had them all of my life. A special interest, for those you who aren’t familiar with the term, is an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.”

In other words, an interest in a topic that is either very narrowly defined or very intense. If you’ve never spent time around someone with Asperger’s you might underestimate what those two phrases mean.

I wrote a post about special interests in general earlier this week. Not surprisingly, one of my current special interests is autism. Here’s a glimpse of what a special interest looks like in action for me:

  • I spend 3-4 hours a day writing, reading, researching and thinking about Asperger’s Syndrome and autism. I’d spend more, but I have to work, eat, walk the dog, sleep, etc.
  • My idea of a fun way to spend an evening is watching a DVD on occupational therapy for sensory dysfunction.
  • I scribble notes for blog posts on scraps of paper at all hours of the day because I’m constantly relating things that I see, read, hear and experience back to ASD.
  • There are 532 autism- and Asperger’s-related scientific articles saved in my Dropbox. There would be more but I only managed to get as far back as 2009 before I lost access to the PubMed and PsychoInfo databases when I graduated.

  • Words like perseverative and motor planning deficit are part of my daily vocabulary.
  • My browser has a bookmark list called “aspie links.” It has too many links to reasonably find anything so I’ve also created another bookmark list called “important aspie links.”
  • Among the important bookmarks is one for the video of the latest meeting of the Interagency Autism Coordinating Committee, in case I need to watch the chapter on the DSM-V updates again.
  • My county library has 51 books and DVDs on Asperger’s and I’m reading/watching them in the order the library catalog lists them. I’m on number 17. When I finish that list, I’ll start on the list of 317 autism-related books/DVDs. In order.
  • If you get me started talking about anything autism related, I guarantee you’ll lose interest long before I do. Unless you’re a fellow aspie with a special interest in autism . . .
Aspie Traits

What’s so Special About a Special Interest?

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First, I need to say that I hate the phrase “special interest.” It sounds demeaning or patronizing. All I can think of is a doddering old great aunt looking over my shoulder at my stamp collection and saying, “well, isn’t that special.”

I’d much rather use “obsession,” or if that’s too extreme, then “specialized interest,” which is more precisely descriptive. But the term most often used in the ASD community is special interest so I’ll use that here, cringing every time I type it.

Okay, with that bit of editorializing out of the way, we can talk about a topic dear to most aspies’ hearts: the special interest. According to the DSM-IV diagnostic criteria for Asperger’s Syndrome, having an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” is a core symptom of AS.

You’ll notice there are two parts to that criteria: intensity or focus. A special interest can be an intense interest in a broad subject (architecture) or a narrowly focused interest (mid-12th century Cistercian monasteries). Generally, narrowly focused interests are also intense, but a special interest doesn’t have to be stereotypically narrow to qualify.

What Does a Special Interest Look Like?

A partial list of my special interests, starting in childhood:

  • Barbies
  • Construction toys (legos, lincoln logs, tinker toys)
  • Text (reading, writing, words, found text, Roget’s thesaurus)
  • Stamps
  • Coins
  • Guinness Book of World Records
  • Baseball cards
  • Sewing (making my own clothes)
  • The stock market
  • M*A*S*H (TV show)
  • The Doors
  • Star Trek:TNG
  • Martial Arts
  • Human detritus (abandoned places, found objects, discarded things, cemeteries)
  • Zen Buddhism
  • Dog training
  • Astronomy, especially Messier objects
  • The Choson Dynasty
  • Shamanism
  • National parks
  • Running
  • Autism (!)

You can look at the list and think, “but everyone has hobbies, what’s so special about yours?” Like much of what differentiates an Asperger’s trait from a general personality quirk, the answer is the degree to which the trait is present.

For example, when I took up running, I didn’t just go out and jog a few times a week. I read books about training for marathons. I found workout plans online and joined a training site to get personalized drills. I learned about Fartlek and track workouts and running technique. I signed up for road races. Ten years later, I spend more on running clothes and shoes than on everyday clothes. I use a heart rate monitor and a distance tracker to record my workouts. If I go on vacation, I pack all of running stuff. I don’t just like to run occasionally; running is an integral part of my life. It fills a very specific need.

A visual representation of some of my special interests over the years

Shelter from the Storm

That’s a key differentiator between a run-of the-mill hobby and an Aspergerian special interest. Spending time engaged in a special interest fulfills a specific need for aspies. It’s more than just a pleasant way to pass the time. For me, indulging in a special interest is how I recharge myself. It’s comforting. It allows me to completely immerse myself in something that intensely interests me while tuning out the rest of the world. If you have a favorite movie that you rewatch or a book you like to return to again and again, it’s a bit like that.

Special Interests Gone Wild

The danger in special interests is that they can become consuming. They can take over every conversation, every free minute of the day, every thought, if you let them. They can be a refuge or a hiding place.

There are days when I’m so engrossed in writing and/or work (I’ve made one of my special interests into a career) that I’ll happily spend eight or ten or twelve hours at the computer. I put dinner on the stove and then forget about it until I smell it burning. The sun sets and hours later I realize the house is pitch dark. If the dog didn’t nudge my elbow when it was time for her to go out or be fed, I would forget that she existed.

Clearly this can be a problem.

Another problem can arise if the object of a special interest is socially unacceptable. When my husband read my list of special interests, he jokingly added himself to it. He was being funny, but sometimes aspies do take on another person as a special interest. If that person is a celebrity, the aspie can safely spend hours learning about and admiring that person from afar. But if the person is someone in the aspie’s life, the special interest may be expressed as unwanted attention, harassment or stalking. (You can read an excellent first person account of this issue here:  Love or Obsession: When a Person Becomes an Aspie’s Special Interest.)

So while most special interests are “harmless,” if an interest involves behavior that is illegal, taboo or a threat to your or someone else’s health or wellbeing, it may be necessary to seek help in redirecting your attention to a safer alternative.

How Does an Aspie Find a Special Interest?

Special interests tend to find us, rather than the other way around. I have no idea what has drawn me to many of my special interests over the years. Most are things that I have an intense but inexplicable fascination with.

Take abandoned places. I can’t explain what the lure is, but I can spend hours roaming an old townsite or quarry. I’m especially intrigued by abandoned psych wards. I can easily get lost exploring websites like this one: 10 Abandoned Psych Wards Photographers Love Sneaking Into

Like writing, reading, and martial arts, my interest in abandoned places and things has been with me since childhood. But other interests have come and gone over the years. A special interest often arises suddenly, becomes intense for a period (months or years) then disappears just as quickly. My collecting-related interests from childhood were like that. I would spend hours organizing, sorting and rearranging my coins, stamps and baseball cards. I’d talk my parents into driving me to collector’s shows, my tattered value guide tucked under my arm, bouncing with excitement at the prospect of filling a hole in one of my collections.

Then, when my interest in one of my collections suddenly dried up, I’d pack my binders and reference books and collecting paraphernalia away in the closet where they’d sit collecting dust while I spent hours comparing annual editions of the Guinness Book of World Records to see which records had changed or clipping articles about M*A*S*H from magazines so I could add them to my scrapbook.

How Much is Too Much?

Special interests are important to most aspies’ happiness and perhaps to our mental health. If I go through a period where I can’t engage in my special interests, I get agitated and spend a lot of time thinking about what I’d like to be doing. For me, and for a lot of aspies, a special interest is our preferred way of de-stressing, recharging and just plain enjoying ourselves.

But like any good thing, it’s possible to overdo it and veer into unhealthy territory. I think it’s safe to say that a special interest has become too consuming when it keeps you from taking care of daily responsibilities (school, work, hygiene), negatively impacts your health (lack of sleep, poor eating habits), or has a significant negative impact on loved ones (limited social contact, financial burden).

However, there is one case where you get to pursue your special interest all day, five days a week, and society gives you an approving thumbs up: when you turn a special interest into a career. Suddenly, you’re no longer a geek who knows too much about C++ programming, production switchers or eighteenth century fashion. You’re a computer programmer, an audio equipment repair technician or a museum curator. Big difference, right?

I’ve been lucky enough to do this twice, making it perfectly acceptable to dedicate most of my waking hours to a favorite subject. I’ve read and heard about a lot of aspies who’ve done the same with their lifelong special interests. It’s certainly not possible for everyone with Asperger’s to turn a special interest into a job or career, but when it does work out that way, you get to be one of the lucky people who earns a living doing what you love.

—–

For another perspective on having a special interest feels, check out Focusing on Special Interests by Jeannie Davide-Rivera who blogs about Asperger’s at Aspie Writer. I especially enjoyed learning about her first special interest, because we shared some favorite baseball players in common as children.

Aspergers Marriage

Lessons from an Aspergers-NT Marriage (Part 3)

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This is the 3rd in a 4 part series about the lessons my husband (NT) and I (aspie) have learned during the 25 years we’ve been married.

Recognize that aspies need plenty of alone time

Being alone is how people with Asperger’s regroup. When I retreat to my home office and close the door, it doesn’t mean I don’t enjoy the company of my family. It has nothing to do with how much I love my husband. It doesn’t mean that I’m disinterested, selfish, cold or insensitive. It means I’ve hit my limit for social interaction and need to recharge.

Somehow, The Scientist figured this out years before we knew anything about Asperger’s and has learned to recognize when I’m nearing my limit, sometimes before I do. If we have guests staying with us for a few days, he makes a point to build time alone for me into the schedule. If he sees that I’m starting to tire or withdraw during a long social event, he’ll suggest that we do something away from the crowd for a short time to help me refocus. He’s also come to accept that when I say I need to leave a social situation, I’ve truly stuck it out as long as I can, and staying longer is going to cost me more than it’s worth.

I probably sound like a social tyrant. Maybe I am. I’m certainly not an average wife who thrives on entertaining and socializing. But I’ve learned that being realistic about my limits–and pushing at them where I can–is less destructive to our relationship than overreaching and ending up in tears.

Aspies need plenty of time alone. It doesn’t mean that we’re disinterested, selfish, cold or insensitive. (Creative Commons 2.0 (by-nc-sa))

 Compromise

Good advice for any marriage, but especially important when one partner has Asperger’s Syndrome. You may find that some of the compromises you make are unconventional. For example, The Scientist and I have realized that we need to compromise about which social occasions I attend. He gets invited to a lot of work-related dinners, cocktail hours, award ceremonies, etc. We’ve concluded–after much arguing, discussing and agonizing–that it’s unrealistic to expect that I’ll attend every event (his preference) or none of them (my preference).

Our compromise is that I’ll attend the important events and he’ll go to the less important events alone.  This means that I’m going to be uncomfortable some of the time (talking to strangers–oh no!) and he’s going to be uncomfortable at times (making excuses for my absence). Like most compromises, no one is completely happy with this arrangement, but it’s the least bad option.

Compromising can be a hard skill for aspies to master. I’ve found that it helps to take a cost-benefit approach. What is doing this for my partner going to cost me? What would not doing it cost him? What are the potential benefits–for him, for me, for our relationship?

For social occasions, the biggest costs are usually the anxiety in the days leading up to the event and the physical exhaustion I’ll feel afterwards. The benefits tend to be a happy husband and some enjoyable moments of social interaction. By listing the costs and benefits as concretely as possible, it’s easier for me to find places where I can compromise rather than reflexively rejecting every social invitation as being too much work.

Identify triggers and try to work around them

Triggers may seem odd or even incomprehensible to the NT partner. Case in point: I don’t like having the bathroom fan on while I shower. The drone of the fan and the feel of moving air on my wet skin are unpleasant sensations. Complicating matters, the shower light and bathroom fan are on the same switch so to avoid the fan I have to shower in semi-darkness. The Scientist thinks this is silly. He rolls his eyes when I flip the switch off. He says I’ll get used to it. He points out that the fan is on the other side of the bathroom. He understands a lot of my quirks but not this one.

All aspies have triggers–experiences that elicit a stress response. Some people have many and others just a few. Triggers can be environmental/sensory (sounds, smells), social (crowds, public speaking), or situational (new places, unexpected changes). Some triggers, like the bathroom fan, are mild. They cause discomfort or low level anxiety, but we can live with them if we have to. Others are more severe, leading to angry outbursts, crying jags or mute withdrawal.

If the aspie partner has clearly identified and communicated her triggers, the NT partner needs to do his best to respect them and make accommodations if necessary. Sometimes an accommodation is as simple as not explaining yet again why something would be fine if only the aspie would give it a try. Other accommodations can be more stressful on a relationship. If the aspie partner can only get a good night’s sleep by sleeping alone or she finds grocery stores intolerable, both partners need to be open and honest about what kind of accommodations are feasible.

Communicate

You’ll find this advice at the top of most “secrets to a happy marriage” lists. The thing about being married to an aspie is that we have serious communication deficits. The NT partner may think he is communicating but most of what he’s saying doesn’t seem to be getting through. NTs communicate in subtle ways that aspies find difficult to interpret.

Here’s a typical example: One day I was making lunch and the following exchange took place:

Me: “I found this great new recipe for chorizo and grits. Do you want to try some?”
The Scientist: “That’s okay. I’m not very hungry.”

I was a little hurt that he didn’t want to try the new recipe I was obviously so excited about but I went ahead and made enough for myself. Thinking he might like to taste it, I offered him a bite.

The Scientist: “Wow, that’s great. Is that all you made?”
Me: “Yeah. You said you didn’t want any.”
The Scientist: “But I hoped you’d make me some anyhow.”
Me: “I asked you if you wanted some and you said you weren’t hungry.”
The Scientist:  “I didn’t want to make extra work and I wasn’t sure if you had enough for both of us.”

I was stunned. It would have been no extra work to double the portion and I had plenty of ingredients. Why hadn’t he just said “yes” when I asked if he wanted some? Apparently I was supposed to know that his “no” meant “yes.” Apparently this is what “good wives” do. We both felt bad afterwards–he felt like I was being selfish by cooking only for myself and I felt like I’d been tested and failed.

Keep in mind that we’ve been married for twenty-five years and know each very well. Yet, this still happens now and then.

Aspies need explicit communication. Forget about dropping hints. Forget about body language and inferences. We need to be told exactly what our NT partner wants, needs, or expects. And we may need to be told more than once, in slightly different ways, until we get it.

In part 4:  love and acceptance, aspie style