Taking the RAADS-R Test

It’s Take-a-Test Tuesday and this week I’m taking The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R).

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a diagnostic instrument that is intended to be administered by a professional in a clinical setting. It was primarily designed to identify adults who often “escape diagnosis” due to a “subclinical” level or presentation of ASD.

The 80 questions on the RAADS-R cover four symptom categories:

  • language (7 questions)
  • social relatedness (39 questions)
  • sensory-motor (20 questions)
  • circumscribed interests (14 questions)

Its validity as a diagnostic instrument was assessed in a 2010 study in which the RAADS-R was administered to 779 people at 9 different clinics in the US, UK and Australia. This is an impressive undertaking; the variety of testing sites suggests that results of the study are highly generalizable (that they can be extended to the general population). However, like all of the other instrument validation studies I’ve seen, this one also has an imbalance in male-female ASD participants, with a greater proportion of males in the ASD groups.

Pros and Cons of the RAADS-R

Pros:

  • Self-scoring
  • Validated in a clinical setting by a multisite study with a large sample size
  • Provides overall and subscale scores
  • Includes questions to assess sensory-motor skills
  • Takes autistic childhood traits into account, even if they are no longer present

Cons:

  • Many questions phrased as always/only/never
  • Complex answer choices may be confusing for some
  • Questions skewed toward social relatedness
  • Longer than most other tests

Taking the Test

There are a few places you can take the test online:

  • I took it at aspietests.org because I like the way they present the scores at the end. However, you’ll need to create an account to take the test there. (I did so about 2 weeks ago and they haven’t spammed me at all, which is nice.)
  • If you’d rather not create an account, you can find a no-personal-information-required version at Aspergian Women United.
  • There is also a paper based version of the test available but it doesn’t include a scoring key.

Wherever you decide to take the test, the format is the same. It took me about 20 minutes, but I spent a lot of time thinking about some of the questions so you may finish more quickly. You’ll be presented with 80 questions and for each you have to select one of the following:

  • True now and when I was young
  • True only now
  • True only when I was younger than 16
  • Never true

This answer format, which is unique to the RAADS-R, allows for the fact that some adults on the spectrum had symptoms as children that they no longer experience or vice versa. Having to think about these options can make the test challenging to complete, but do your best to select the most applicable option. Each of the four options has a different score value so accuracy counts on this one.

I often found that none of the four choices was exactly right because the questions tend to be phrased in an “always/never/only” format when what I really needed was a “sometimes” or “most of the time” phrasing. I also found it hard to answer some of the vaguer questions when it came to my childhood because my memories weren’t specific enough or I wasn’t a very self-aware child (which is a clue in itself, I suppose).

Scoring the Test

Each question is scored on a 4 point scale:

  • 3 if the symptom is always present (or never present for “normative” questions)
  • 2 if the symptom is only present now
  • 1 if the symptom was only present in childhood
  • 0 if the symptom was never present (or always present for “normative” questions)

If you take the test at the Aspie Tests site, you’ll receive an overall score plus 4 subscale scores. If you take it at the Aspergian Women United site, you’ll get only an overall score.

In the 2010 study, the scores for those previously diagnosed with ASD range from 44 to 227. The scores for control group members ranged from 0 to 65. The researchers set a threshold of 65, meaning that a score of 65 or greater “is consistent with a clinical diagnosis of ASD.”

It’s interesting to note that only 3% of the people with ASD had a score below 65 and 0% of the control group participants had a score of 65 or higher. There is very little overlap between the two groups, unlike the AQ study results.

In addition to an overall score, the RAADS-R provides 4 subscale scores. The creators of the test emphasize that the overall score is more accurate than any of the subscale scores alone, but the subscales are still informative if you’re curious about where your stronger/weaker areas are. The researchers also state that the RAADS-R is not intended to be administered outside of a clinical setting (such as online or by mail, both of which are valid AQ administration methods).

Here are my scores:

Overall and subscale scores from aspietests.org
Overall and subscale scores from aspietests.org (click to see a larger version)

Total score: 175

Subscales:

  • Language: 6
  • Social relatedness: 97
  • Sensory/motor: 36
  • Circumscribed interests: 36

Any of the scores that are highlighted in yellow are above the clinically identified threshold values for ASD.

The averages given in the chart above are for people who took the test at the aspietest site. They tell you how you compared against other people who identify with the same neurotype as you, but little else.

The Bottom Line

The RAADS-R uses a slightly different approach than other autism screening instruments, making its use more appropriate in a clinical setting. However, it still provides an interesting snapshot of autistic traits for those who take it informally.

Always Read the Label

When I learned that I have Asperger’s Syndrome, my first impulse was to read everything I could get my hands on.  I was excited to discover that my town’s library has a large collection of books about Asperger’s and autism.

I went to the library, armed with my list of call numbers, and was surprised to discover that only two of the books listed as available in the online catalog were actually on the shelf. Puzzled, I brought up the entries for Asperger’s on the library computer and realized that I’d glossed over one key detail: most of the books about Asperger’s and autism were shelved in the library’s Disability Resource Center.

Looking down at the two books in my hand, I noticed the bright orange DRC stickers on the spines. The books I’d found in the general collection had been shelved there by mistake.

Some of the autism books that I borrowed from a nearby town library had a more generic "Health Information Center" sticker on the spine.
Some of the autism books that I borrowed from a nearby town library had a more generic “Health Information Center” sticker on the spine.

And so I was confronted with the question I’d been avoiding: am I disabled?

Like many people who discover they’re aspies later in life, I already have a fairly strong self-concept built around a set of labels I’ve carried with me most of my adult life:

  • woman
  • wife
  • mother
  • entrepreneur

From the start I was surprisingly okay with adding aspie to that list. It’s a label that explains much of what makes me different from other adults. It’s so much easier to say I’m an aspie than to try to catalog the long list of ways in which my brain functions differently from a neurotypical brain. Even when the Asperger’s designation is retired in 2013, I think I’ll still identify as an aspie because that’s how I entered the spectrum.

Autistic was a harder label to accept. I’d always thought of autistic people as nonverbal and cut off from the world. I now realize that I’d bought into a dangerous stereotype.

As part of the online autism community, I’ve learned a lot over the last few months. I’ve learned that the autism spectrum is as diverse as the neurotypical spectrum. I’ve learned speaking is not the only means of communicating with the world around us. I’ve learned that the autism spectrum is not hierarchical; we can’t quantify the people on it using neatly bounded phrases or concepts. I’ve learned that autistic adults have a responsibility to stand up, speak up and continue speaking up.

So, yes, I’m autistic and proudly so.

But disabled? I actually Googled a definition to see what the word means in a pure etymological sense. So here it is, straight from Google’s dictionary:

A physical or mental condition that limits a person’s movements, senses, or activities.

Undeniably, yes, that applies to me. Asperger’s is a neurological (physical) condition that limits (or at least alters the function of) my senses and my activities to varying degrees.

Still, I struggle with the Disabled label. My resistance has nothing to do with the appropriateness of a dictionary definition and everything to do with my biases against the negative connotation of the label.

There is a strong and growing movement in the ASD community to emphasize the strengths that result from being on the spectrum. There are many and, personally, I wouldn’t trade my aspie strengths for the ability to make small talk or not bump into the furniture with alarming regularity.

Well, on most days I wouldn’t.

But here’s the funny thing about labels. Even though I don’t think of myself as disabled, I still have to go into the Disability Resource Center to pick up books about people like me.

Do other people see me as disabled?

Undoubtedly some do.

Maybe the real question is, does this bother me?

I guess it does, on some level. Would I be writing about it if I didn’t?

I’d like to say that thinking and writing about complex issues like this helps me untangle them but sometimes I end up more uncertain than when I began. Instead of coming to a conclusion, I’ve come to an occlusion. I literally have nowhere to go with the rest of this piece because each path I start down leads me deeper into the weeds until I encounter thoughts so thick and overgrown that I have to turn back.

So instead of putting a bow on this and calling it done–something I’m sure I would regret doing because my understanding of this topic is still so poorly formed–I’m going to challenge myself to continue reading and thinking and learning, to dig deeper. I’ll be back in early March with an update–not necessarily with answers, but certainly with more thoughts.

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some related posts by other bloggers about labels, how we identify and the significance of language:

I know there are many, many more smart thoughtful posts and articles about this topic. If there’s something you think I should add to this list, let me know. I’ll continue building it as I read and explore.

Tactile Defensiveness

Polly Flinders was the bane of my childhood. I hated her with a passion. Why? Because she made dresses like this that were all the rage for little girls in the seventies:

A classic Polly Flinders dress. I had one just like this, same color and all.
A classic Polly Flinders dress. I had one just like this, same color and all.

For a four-year-old with tactile defensiveness, that dress was an instrument of torture. I can still feel the exposed elastic biting into my upper arm, the scratchy lace prickling my skin, the rasp of the tag on the back of my neck, the smocking bunching up across my chest.

Thanks to Polly Flinders and her ilk, I was branded a tomboy early in life. Not because I didn’t like dresses, per se. The way clothing feels is ten times more important to me than how it looks and “boyish” clothes (jeans, plain cotton shirts) were more comfortable.

I still shop for clothing based on feel first and look second. Where a lot of women see exciting new outfits, I see this:

Thanks to my tactile sensitivities, I'm a defensive shopper when it comes to clothing.
Thanks to my tactile sensitivities, I’m a defensive shopper when it comes to clothing.

Clothes shopping is a matter of eliminating the things I know will be too uncomfortable then choosing what I like from the remaining options. If there are any.

When I do find something I like–and by like, I mean something that’s comfortable–I tend to buy it in multiples. I have a rainbow of v-neck t-shirts and long sleeve tees, all exactly the same brand, style, material and cut. Last weekend, I found a soft comfy sweater at Old Navy and bought it in three different colors.

When I like something, I’ll wear it until it literally falls apart. The few things I really love–my favorite pair of jeans, my softest t-shirt–I put on as soon as they come out of the wash. They rarely get hung up in the closet.

That isn’t to say that I live in tees and jeans. I have some dressier clothes that are comfortable. I try to dress both comfortably and appropriately for the situation. You’re just not going to find me greeting my husband at the door in pearls and heels like June Cleaver.  Continue reading Tactile Defensiveness

Taking the “Fear, Anger and Joy” Test

This week for Take-a-Test Tuesday, I took the “Fear, Anger, Joy” test. It’s not an Asperger’s test, but it does measure something that aspies often struggle with: reading emotions through facial expressions. Also, since the last two tests have been question-oriented, I thought a visually-oriented test might be a nice break.

testmybrain.org is a citizen science project run by Harvard University. The website is used to conduct large-scale behavioral research studies with the goal of developing neurocognitive tests. By taking one (or more) of the tests on the website, you contribute to ongoing research and you also get a nice little write-up about your results, what they mean and why the research is being done.

I like the interactivity of the tests and the novel approach that Test My Brain takes. For example, the test that I’m taking today, “Fear, Anger and Joy,” is a test of the ability to identify emotions in facial expressions. Unlike some of the other facial expression recognition tests out there that allow you to study an expression for an unlimited time before identifying it, this test only allows you to see the facial expressions for a couple of seconds. I feel like this is closer to what happens in social situations, where facial expressions are fleeting.

Pros and Cons of Fear, Anger, Joy

Pros:

  • Automated and self-scoring
  • Better simulates social situations by limiting viewing duration for each set of faces
  • Detailed explanation of scores
  • Results include average scores and percentile ranking so you know how you measure against others who’ve taken the test
  • Explanation of why the research is being done with a link to more info
  • Taking the test contributes to ongoing research

Cons:

  • Test is part of active research so no conclusive results
  • No direct link to AS/autism/autistic traits
  • Forced choice between 2 options equals a 50% chance of being correct when guessing

Taking the Test

This test takes 15 to 20 minutes so be sure you have the time to complete it before you begin. To take the test, go to testmybrain.org and click on the Go! button next to the “Fear, Anger, Joy” test (you may have to scroll down to find it–the order of the tests changes).

You’ll be asked to make your browser window large. I kept mine the size I normally use and it worked fine. The next screen is a simplified informed consent form. You’ll be told what the research is being used for and asked to consent (agree). Once you do, you’re officially a research subject! The next screen collects some demographic information. It’s all anonymous–you won’t be asked any identifying information to get your results or anything annoying like that.

Once you’ve entered your demographic info, you’ll begin the test. There are a couple of practice questions before the first set of faces appears. You’ll see two faces side by side and be asked to identify which is happier, sadder or angrier. There are 56 sets of faces for each emotion. That sounds like a lot until you realize that each set is visible for only a couple of seconds.

After you’ve completed all three sets of faces, you’ll be asked if you encountered any technical problems or if you cheated in any way. Researchers think of everything. Once you confirm that your results aren’t tainted, you’ll be taken to the scoring page.

Scoring the Test

The aim of the test is to evaluate how well people can detect subtle differences in the level of emotion conveyed by an expression. I found the expressions presented at the beginning of each to be obviously different. One face was clearly much happier, sadder or angrier.

As each section progressed, the differences in the expressions became much less obvious and I found myself guessing more frequently. I also realized that scared and happy can look similar to me. The same is true for scared and angry.

Here are my scores (out of a possible 56 on each section):

Which face is angrier?: Your score was 45. The average score is 45.18.You scored higher than three out of every ten people who took this test.

My rankings on the anger section
I scored slightly below average on the anger section.

Which face is happier?: Your score was 54. The average score is 49.49.You scored higher than seven out of every ten people who took this test.

Nearly a perfect score on the happy faces!
Nearly a perfect score on the happy faces!

Which face is more afraid?: Your score was 47. The average score is 43.18.You scored higher than six out of every ten people who took this test.

And a little bit above average on the afraid faces.
And a bit above average on the afraid faces.

I did better than I expected to. I’m not surprised that I score the highest on the happy faces because happiness is (for me) most clearly expressed around the mouth (smiling) and that’s where I most often focus my gaze.

Anger forced me to look at the area around the eyes more and I had to purposely do that. For fear, I quickly found a pattern that helped me: furrowed brows or foreheads. I spent the rest of the “afraid” section looking first (and sometimes only) at the foreheads of both people to see which looked more scrunched up. Maybe I should have confessed to cheating?

Apparently I have trouble taking in a facial expression as a unified whole. I seem to look at the various parts for clues and then try to sum them up.

I also found my perseverative nature kick in when I had to change from finding the angrier face to finding the happier face. On the first of the happy practice sets, I chose the angrier face because that’s what I’d been doing for the previous 58 trials. Oops.

The Bottom Line

This test was fun to take and I felt like I learned something about how I process facial expressions.

How did you do? Were you surprised by the results?

The Island of Misfit Toys

In honor of the annual airing of Rudolph the Rednosed Reindeer this coming Tuesday.

—–

When I was in elementary school, I was fascinated by the Island of Misfit Toys.

If you have no idea what I’m talking about, here’s an outtake from Rudolph the Rednosed Reindeer. Rudolph and his friends have just found themselves on the Island of Misfit Toys and the toys are describing their problems:

The Island of Misfit Toys is like aspie heaven–a place where no one measures up to conventional expectations and you’re not even allowed to stay if you might be the least bit “normal.” A place where it’s okay to be a bird that swims or a cowboy who rides an ostrich.

Because that’s the real issue with living in a neurotypical world, isn’t it? Conventional expectations. If 99% of people had aspie brains instead of neurotypical brains, then aspies would be the baseline. Imagine a world where making small talk was considered dysfunctional and hugging someone you’ve just met was frowned upon.

But we aspies live in a world filled with norms and expectations that we often don’t understand or that we find ridiculous. A world that isn’t going to conform to our standards. So the question becomes: move to the island of misfit toys or give up swimming and learn to fly like the other birds?

Much of the self-help information out there for adults on the spectrum is focused on learning to fly in formation. Learning to assimilate, to pass, to appear less autistic.

To a certain degree, assimilating is beneficial. If you’re the train with square wheels or the boat that sinks, learning basic life skills is necessary. We live in an NT world and refusing to acknowledge that fact is going to result in frustration and bitterness. A certain amount of assimilation makes life easier. Given all of the challenges aspies face, that doesn’t seem like a bad thing.

But what if you’re the cowboy riding the ostrich?

Well, does the ostrich make you happy? Can you ignore the strange looks and snide comments from some of the other cowboys? If you’re like me, you’ve probably developed a certain capacity for ignoring what other people think about you. Maybe you even like defying conventional expectations.

As adaptive strategies go, flying your freak flag sounds like a pretty good one to me.

Let’s Be Independent Together

Early on in Rudolph the Rednosed Reindeer, Rudolph and Hermey decide they’re going to fly their freak flags. They’ve had it with conventional expectations. Their efforts at assimilation have failed and they’re tired of being ridiculed for being different.


They come up with a solution that’s wonderfully Aspergerian: they decide to be “independent together.” It’s meant to be a silly play on words, but there’s a lot of wisdom in that phrase.

To be independent together is to accept our differences, to celebrate what makes us uniquely autistic, each in our own way.

To be independent together is to walk our paths, side-by-side, but not in lockstep.

To be independent together is something we can each do, right now, today.

Just look around until you find one of those unconventional cowboys. When you do, give ’em a smile and say, “Hey, that’s a cool ostrich you’ve got there.”

It’s that simple.

To be independent together is something we can each do, right now, today.
To be independent together is something we can each do, right now, today.

Wide Awake: Autism, Insomnia and Me

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

Taking the Autism Spectrum Quotient (AQ) Test

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.

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*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.

Nightmares: An Experiment in Anxiety Management

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.

Taking The Aspie Quiz

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.

I Can, But I Won’t

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.

one woman's thoughts about life on the spectrum