Taking the Aspie Quiz (Version 3)

The Aspie Quiz was recently updated to Final Version 3, which is a major update, so I thought it would be a good idea to retake it. Much of what’s changed is behind the scenes refinement of the test items and won’t be evident to the average test taker. If you’re new to the Aspie Quiz, you might want to read my original write up for more background. This post will focus primarily on what’s new.

If you’ve taken the Aspie Quiz before, you’ll likely notice that there are some new questions and that the wording of the test result has changed. Previously, test takers received Neurotypical and Aspie scores; currently the scores are presented as Neurotypical and Neurodiverse, with an outcome of “likely neurotypical”, “likely neurodiverse” or a mix of the two.

In the context of the test, the term neurodiverse includes autism, ADHD, dyslexia, dyscalculia, and dyspraxia (and perhaps OCD and Tourettes). However, the test still appears to be primarily a test for autistic traits. This is reflected in the statement that:

The goal of this test is to check for neurodiverse / neurotypical traits in adults. The neurodiversity classification can be used to give a reliable indication of autism spectrum traits prior to eventual diagnosis.

If you want to read more in detail about the development of the Aspie Quiz and what has changed over time, Leif Ekblad has published a paper detailing his research and a detailed history of the quiz. Of particular interest is the comparison of the AQ and Aspie Quiz scores, particularly for women. As many of us who’ve taken both have noticed, the AQ has a strong gender bias and the Aspie Quiz is more gender neutral. Anecdotally, the Aspie Quiz has always appeared to be a better predictor of whether someone is on the spectrum and that is addressed in the paper as well.

There are some aspects of the paper that I found problematic, but I’ll leave that to others to critique and focus here on the test itself. Before I do that, however, there is one sentence in the paper that jumped out at me that I want to share:

The idea that neurodiversity/autistic traits lie on the extreme end of a normal distribution is not supported by Aspie Quiz, rather the neurodiversity traits seem to have its own normal distribution overlapping the normal distribution of typical traits.

For those who have wondered why they receive two scores on this test, I think the above quote sums it up nicely. It’s also a good response to the oft-repeated fallacy that “everyone is on the spectrum” or “everyone is a little autistic.”

Taking the Test

To take the Aspie Quiz, start here. You have the choice to login/register or to proceed directly to the test. If you choose the former, you’ll be contributing to the test developer’s research regarding the stability of test scores over time (assuming you take the test more than once).

Once you’ve proceeded to the start of the test, you’ll first be asked some demographic questions. The information you share is used in the development of the test and has no impact on your scoring.

The test itself is 128 questions, answered on a Likert scale. The choices are: don’t know, no/never, a little, yes/often. The test will take about 20 minutes, so be sure you have enough time to finish it before starting.

Scoring the Test

At the end of the test, you’ll get neurodiverse and neurotypical scores, along with a “likely” prediction. Here are mine:

  • Your neurodiverse (Aspie) score: 156 of 200
  • Your neurotypical (non-autistic) score: 54 of 200
  • You are very likely neurodiverse (Aspie)

You’ll also get a nice spider web graphic and the option to download a PDF with more details, which I highly recommend doing. The PDF contains detailed information about which questions count toward which aspect of your score and includes some background information that may be helpful in interpreting your scores in each category.

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On the previous version of the test, I scored:

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

Since the last time I took the quiz, there are quite a few new questions and in particular a batch of new questions about sexuality and relationships. Given that I scored so high in Neurotypical attachment (i.e. sexuality) and relatively low in the social and contact on the neurodiverse side, I suspect the relationship and sexuality questions are the biggest factors in shifting my scores toward neurotypical.

Some of the questions in those areas were hard to answer accurately because they’re worded as if the test taker is seeking a romantic relationship or interested in dating, an assumption that doesn’t apply to either those in a monogamous relationship or those who are aromantic or asexual.

Although the quiz avoids gender bias, a few of the questions are biased in the direction of heterosexuality or presumption of asexuality as a non-neurotypical “preference”. More careful wording of some of the new relationship/sexuality questions to encompass both LGBTQ test takers and those in monogamous relationships would help mitigate some of this problem.

But I also think that the role of romantic and sexual preferences in the test outcome would benefit from a different approach. It’s stereotypical and ableist to assume that neurotypical people are sexual and neurodiverse people are not. The neurodiverse people that I know are distributed over a wide spectrum of sexuality and sexual preferences, from asexual to hypersexual and everything in between, just like the neurotypical people that I know.

Looking at the Attachment category questions in the PDF, all of the Neurotypical Attachment traits are related to sex. The Neurodiverse Attachment traits, on the other hand, are questionable in their relevance to attachment versus things like language pragmatics and learning social skills through rules. Surely neurotypical people are interested in aspects of attachment other than sex. More importantly, it’s disappointing to see a test of neurodiversity ascribing typical autistic social traits to “attachment disorder.”

Overall the new questions are much like those of the earlier version that I took: a mix of the highly relatable with the expected, plus a few that I have trouble tying back to any known autistic traits.

I was amused by “Do you have a need to confess?” because I’m so bad at lying or concealing things from people and inevitably feel the need to spill my guts at the drop of a hat. There were a few perplexing ones, including the one about walking behind people and the one about examining people’s hair. (And I still don’t get the slowly flowing water question – though I suspect it identifies people who are visual stimmers in general.) I wasn’t sure how to interpret the “afraid in safe situations” question. Maybe it’s meant to reveal phobias or irrational anxiety?

Finally, the “criticism, correction, direction” question is repeated twice with slightly different wording (possibly as a check question).

The Bottom Line

Of all the online tests I’ve evaluated, the Aspie Quiz has always felt like the most accurate in overall scoring and the most comprehensive in variety of questions and that’s still the case. I’ll be curious to see how re-takers feel about their scores and what direction, if any, scores have shifted in.

 

Chronologically Out of Step

When our daughter Jess was little, her dad and I used to take her to see a lot of animated movies. Jess and I really enjoyed them, but The Scientist often dozed off twenty minutes into the film. He slept through Toy Story and Shrek and Monsters Inc. before we all decided that a better plan was to split up when we went to the movies. That way he was free to see the latest action movie while Jess and I watched the newest offering from Pixar or Disney.

The Incredibles, Cars, innumerable sequels in the Monsters, Toy Story and Shrek series. Nightmare Before Christmas. Brave. WALL-E. Coraline. Up. Paranorman . . . Actually, I saw quite a few of those by myself. Jess is all grown up now and The Scientist still isn’t a big fan of kid’s movies. To be fair he stayed awake for the entire Lego Movie and thoroughly enjoyed Big Hero 6, but he wouldn’t have gone to see either if I hadn’t suggested it.

I imagine quite a few adults would consider my interest in animated movies that are mostly marketed to children to be childish. It certainly hasn’t escaped my notice that most of the other adults in the theater are there to chaperone children.

I’m not sure what it is about animated movies that I enjoy so much. Maybe it’s a sense of nostalgia, dating back to the time when I was a young parent and the excitement that we shared as a family going to a new movie. Maybe it’s the sly humor that the writers build in for the adults in the audience alongside the simple feel-good themes that most of the movies have. I’ve even seen it suggested that many of us gravitate toward animation because the exaggerated facial expressions are easy to decipher.

Maybe I just really like animated movies.

Whatever the underlying reason, it’s hard to escape the sense that my enjoyment of the movies is somewhat age inappropriate. I don’t know a lot of other middle-aged women who were as excited as I was about the Lego movie. I do know better than to blurt out “How about that Lego movie?” when talking with most other women my age.

Fortunately not all of my tastes in media run toward children’s programming. In fact, I wouldn’t be surprised if Netflix created a recommendation category for me titled “Dramas with Large Ensemble Casts and Lots of Cursing.” That gives me sufficient fodder for dinner party conversation when the subject turns to movies and TV.

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Age Appropriate

The concept of “age appropriate” has been one that’s always haunted me. In elementary school, from about fourth grade, I began to get the sense that most of my peers seemed to somehow older than me. As if they knew something I didn’t.

By the time I got to middle school, that vague sense of being “behind” widened into a very obvious maturity gap. Many of the other girls in my class were developing an interest in dating and fashion and other things that marked a critical right of passage, and in which I had little intrinsic interest. In high school, most of my peers spent the school week looking forward to a weekend of drinking, partying, dating, football games and dances. Again I felt left out, having barely caught up with the concept of dating.

My interests ran more toward listening to music, reading, riding my bike, and shooting baskets in the driveway. At least the ones that I would publicly admit to. I also had a huge fascination with the TV show M*A*S*H and still liked to pull out my collections of baseball cards, stamps, and coins. Occasionally I pulled out my model train set or my Matchbox cars and Barbies were still in my closet. My bed was home to as many stuffed animals as it could hold and I still had a well-worn baseball mitt that I’d gotten in fourth grade.

Instinctively, I knew that there were things that it was “okay” for a teenaged girl to be interested in and interests that were best kept to myself. Sometimes the appropriateness of an interest hinged on gender stereotypes, but just as often it was related to age, either in the sense of something being “too childish” (or sometimes “too adult”) for the age that I currently was.

I spent a lot of years assuming that I would simply catch up with my peers, that I would develop an interest in partying and chasing boys at football games and gossiping on the phone for hours after school each night. When I graduated, without that ever having materialized, I somehow went right on assuming that I would catch up with the adults that I saw around me who invariably seemed much more adult to me than I seemed to myself.

I’m sure this is a typical reaction of many young people as they make the transition into adulthood in their early twenties, however I was still thinking this in my late thirties and early forties. After being diagnosed with Aspergers, I finally realized that there would be no magical catching up with my peers. I was simply different and that was okay.

By Whose Milestones?

The really interesting aspect of this to me, is that while autism is commonly referred to as a developmental delay, no one ever explicitly told me that I was “delayed.” Many years spent comparing myself to my typical peers and seeing the obvious differences had somehow caused me to assume that I was just a few steps behind them.

It’s not surprising to me that many parents look at their autistic children and make the same assumption, often with the encouragement of doctors, teachers, and other professionals in their children’s lives. And in the same way that I passed many years simply assuming that I would catch up, I think many parents spend years operating under the assumption that the goal of their children’s education should be to “catch them up” to their typical peers rather than to equip them in ways that are practical and useful for the child.

Ariane Zurcher recently wrote a blog post about how focusing on the belief that her daughter Emma was developmentally delayed caused her to pursue therapies that in the end she felt were not helpful to Emma. Here’s a quote from that post (emphasis is mine):

“for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.”

Ariane’s words hint at the danger that lurks in the idea that autistic kids need more than anything to catch up to their nonautistic peers. The emphasis, when working from that assumption, is on getting the child to do things in a way that may not be the best possible way–or even possible at all–for them.

A straightforward and common example is speech. Here are some standard developmental milestones for speech and language:

  • by 3 months: makes eye contact
  • by 6 months: imitates sounds and facial expressions
  • by 12 months: says 1 or 2 words
  • by 21 months: uses at least 50 words, names objects
  • by 24 months: begins to use 2 word phrases, uses simple pronouns
  • by 36 months: asks simple questions

If an autistic child isn’t making eye contact, smiling when smiled at, or saying a couple of words by 18 months, it’s very natural for their parents to look at the other toddlers who are doing all of these things and assume that their child needs professional intervention to help them catch up with their peers.

However, autistic language development varies greatly from the developmental norms. Some autistic people speak early, some at a typical age, others at a later-than-average age and some not at all. Some of us use speech for simple interactions and text or other means for more complex interactions, while others use AAC for all communication. Some of us never reach typical milestones and other leap over milestones at an atypical age.

We are each literally our own developmental milestone chart and to compare an autistic person’s language development to their peers–autistic or not–is both unfair and counterproductive.

The typical developmental milestones are useful as a diagnostic aid, but beyond that they are simply a distraction. Rather than focusing on meeting a set of speech milestones, the emphasis should be on finding communication methods that work reliably for the individual autistic person.

The Fallacy of Mental Age

Another potential pitfall of the developmental delay paradigm is that it leads to the assumption of “mental age” in those individuals who don’t meet developmental milestones on the expected schedule.

If a child is mostly nonspeaking until the age of 5, echolalic for several years after that, and begins to use short phrases at 12, some people will make the assumption that the child not only has the language abilities “of a 2-year-old” but also the thought processes and cognitive abilities of a 2-year-old. As many parents of children who began speaking at a later age can tell you, that’s far from true.

A person who is echolalic at 7-years-old, speaks in short phrases at 12 and uses some sentences at 22 isn’t simply delayed. They have a completely different communication ability than their peers. It’s entirely possible that they’ve been capable of typing in full sentences for a decade or more before they used any sentences verbally. Perhaps not, but unless they’re given the chance to learn to use a variety of communication tools other than speech, no one will know for sure.

Chronologically Out of Step

The inspiration for this post was in part a Facebook discussion that Ariane initiated prior to the post I linked to above and in part some comments on the Intersection of Gender and Autism posts here.

I was struck by how many of us had a sense that we were somehow lagging behind our peers when we were younger or how we still had interests that might be considered age inappropriate by people given to making such judgments. In each of these comments, there was a hint (or more) of embarrassment around these interests.

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That got me thinking about all of the ways that I’ve felt chronologically out of step over the years and, more importantly, why. As always, the what of it is fairly easy to quantify, but the why is trickier.

Sometimes the sense that I was lagging behind was tied to not wanting to give up a special interest or to returning to a “childish” special interest for comfort. My love of animated movies and the giant stuffed dog that resides on my couch are a couple of innocuous present-day examples.

Other times, particularly around adolescence, I think missing out on big chunks of social cues and being mostly oblivious to certain types of peer pressure contributed to my sense that I was socially and emotionally younger than my peers. I suspect most kids didn’t necessarily want to start dating in middle school, but they knew that socially it was important to show that they did. It made them seem mature or cool or whatever it was that meant fitting in. Which, incidentally, was exactly the thing I could never seem to intuit and obviously still can’t quite pin down.

Most likely, there were girls who made fun of me in middle school and high school for being so out of step with what was expected but I was mostly too clueless to notice if anyone was whispering about me behind my back. And really, when you have people who will outright tell you that you’re a dork to your face, there isn’t much point in searching for more bad news.

These things, combined with the ever-present sense that I was different from most other kids left, me always feeling the need to catch up but never quite knowing how to do that.

Which brings me to an interesting point that Anna raised in the comments: there is a difference between throwing out the concept of a delay and throwing out all hope of a person learning new skills. She specifically mentioned that as a child, she was left to her own devices a lot and not really pushed to learn organizational or social skills or to further her interests in new ways. She pointed out the value of a “golden middle way” in respecting differences while helping children develop the sort of executive function skills and understanding of the social world that will smooth the road for them a bit as adults.

When Frogs Fly

Finally, it’s important for parents and others who work with autistic kids to understand the difference between, for example, understanding the social world and having neurotypical social skills. The former is achievable to some degree for many of us on the spectrum; the latter not so much.

For example, my social skills are not and never will be those of a typical adult. I don’t have the social skills of a 14-year-old or a 20-year-old or a 30-year-old. It’s not as if I’m simply behind some imaginary developmental curve. My ability to read facial expressions and body language has been “stuck” at the basic level for decades. And I’m fine with that. I have coping mechanisms to make up for some of what I lack and the rest I’ve learned to live with. In the past, I’ve tried to learn how to read more subtle nonverbal communication and finally concluded that it’s not going to happen.

In fact, as I was talking about some preliminary ideas for this post with The Scientist, I told him that teaching me to make consistently natural-looking eye contact would be like teaching a frog to fly. No matter how many times you take the frog up on the roof and toss it off, it’s never going to sprout wings. And it doesn’t need to.

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A/N: While looking for photos to illustrated this post, I saw the gingerbread people photos and thought “ooh, cute!” and decided to use whimsical gingerbread people family portraits to illustrated my Very Serious Post because it felt delightfully age inappropriate. 

Taking the Stroop Test

I took the Stroop test as part of my ASD evaluation and I’ve seen it recently on a list of online autism evaluation tests. While not strictly an autism test, it is often part of the test battery that is given at neuropsychological evaluations for autism.

The format of the Stroop test that I took during my evaluation was:

  • verbally reading a list of color words (blue, red, green) printed in black ink
  • verbally stating the color of a series of Xs printed in blue, red or green ink
  • verbally reading a list of color words that were printed in colored ink (i.e. RED printed in blue ink or RED printed in red ink)

The Stroop test is a test of executive function. Our brain’s natural tendency is to read words that we’re presented with; noticing the color of the ink the word is printed in is a secondary priority. The Stroop test asks us to inhibit our first instinct (reading the word) in favor of stating the color of the ink. Doing so draws heavily upon the executive functions of inhibition and attention.

Because autistic people typically have impaired executive function, we often score below average on the Stroop test. The time taken to complete the test is also seen as a measure of cognitive processing speed, another area where autistic individuals will typically have a below average result.

There are quite a few other conditions that also cause cognitive “interference” on this test, resulting in below average scores, including ADHD, dementia, brain damage, depression, schizophrenia and addiction. While the results of the Stroop test can give you some insight into your executive function abilities, it’s not strictly related to being or not being autistic.

Taking the Test

You can take a mini version of the Stroop test here.  The test site is ugly and has lots of ads that you’ll have to ignore. Read the instructions in the center of the page and click the green button when you’re ready to begin. The test has 20 items and will take a couple of minutes to complete. You’ll receive your scores on the final screen of the test.

Scoring the Test

The reason I called this a mini version of the Stroop test is because it has only 20 trials. The version of the test I took at my evaluation had 300 trials across the 3 different types of tasks, with each set of 100 having a 45-second time limit.

The online version presents 15 incongruent (ink color and word do not match) and 5 congruent (ink color and word match) trials. It then gives you a score showing your congruent and incongruent results, with number correct and the average processing time for each. Generally, most people respond more quickly the congruent pairs than the incongruent pairs.

Here are my scores for the online version:

  • Congruent: 5 Correct, avg response time: 11.78 seconds
  • Incongruent: 15 Correct, avg response time: 10.20 seconds

(Admittedly I have an advantage because I was familiar with the test format and I think my scores reflect that.)

And here are my scores for the paper version (raw score, followed by percentile – in both cases higher is better):

  • Word (color words/black ink): 82, 12th percentile
  • Color (Xs/3 ink colors): 91, 27th percentile
  • Color-Word (color words/3 ink colors): 110, 75th percentile
  • Interference (calculated from other scores): 121, 92nd percentile

If you look at both sets of scores, you’ll see that I’m better at the incongruent tasks. I got higher scores on the Color-Word and Interference scores for the paper test and had a faster average response time for the incongruent pairs on the online test.

When I saw my scores from the paper test, I was shocked by how poorly I did on the first two tasks, which felt effortless when I was taking them. I have no explanation for the disparity in my performance, except that maybe when a task is more difficult, I pay closer attention and therefore do well on it. I had a similar outcome on another “easy version-hard version” test during my evaluation which supports this supposition but there may be another explanation that has gotten by me.

The Bottom Line

How useful is the online Stroop test? I think it’s more valuable as a curiosity satisfier than an actual measure of cognitive processing. First, it doesn’t have the “priming” tasks of reading the words in black ink and naming the colors of the Xs, which create performance patterns in the brain, supposedly making the color-word task more difficult.

Second, there is no overall time limit so the test taker doesn’t feel pressured to rush through as many items as possible to complete the test in the allotted time. The response time score compensates for this a bit, but there’s no mention at the beginning of the test that one is being timed.

Finally, the number of items is too few to cause the cognitive fatigue that makes the paper test challenging.

At the Intersection of Gender and Autism – Part 3

The final post of a three part series (read Part 2)

 

While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.

The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.

With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”

That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.

It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.

At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of  my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.

Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.

Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.

The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.

At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.

The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.

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Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?

Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.

Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.

My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.

Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.

Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.

I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.

If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

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Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.

I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.

As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.

I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.

In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.

There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.

At the Intersection of Gender and Autism – Part 2

Continued from Part 1

There was joy in that realization and also sadness. My diagnosis came too late to help me in my role as a mother when my daughter was young, a role that I often struggled with. Many aspects of being autistic can make the child-rearing years of motherhood challenging.

Babies have round-the-clock needs. They’re stressful, messy, unpredictable and demanding. Basically they are everything that an autistic person finds hard to cope with. Gone was my precious alone time. Gone were my carefully crafted routines. Even my body was no longer my own, transformed first by pregnancy then by postpartum hormones and breastfeeding.

I was completely unprepared for how hard motherhood would be. Unaware that I was autistic, I often felt like a bad mom. What kind of mother breaks down sobbing uncontrollably and bangs her head against the dining room wall? Certainly none that I was aware of at the time.

Perhaps knowing why I was having so many meltdowns–or even having a proper word for the those scary sobbing, headbanging episodes–would have made the early days of motherhood easier. Perhaps knowing that I have a social communication impairment would have pushed me to understand why it’s important for a mother to frequently say “I love you” to her child.  Continue reading At the Intersection of Gender and Autism – Part 2

At the Intersection of Gender and Autism – Part I

Note: This is my contribution to the Ultraviolet Voices anthology. It’s nearly 5000 words long, so I’m going to serialize it here over the next 3 weeks.  

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Dresses were all scratchy lace trim and tight elastic sleeves. Stiff patent leather shoes pinched my sensitive feet. Perfume tickled my nose. Tights made my legs itch and had maddening seams at the toes.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

Continue reading At the Intersection of Gender and Autism – Part I

Unreasonable Goals

When I was researching language pragmatics for my recent echolalia and scripting post, I came across an IEP goal bank. For those of you who aren’t familiar with these terms, IEP stands for Individualized Education Plan, which is a personalized document that describes an educational program designed to meet the needs of a child who is enrolled in special education. It includes, among other things, information about current performance, annual goals, services, accommodations, and progress.

Presumably to make these unwieldy documents easier to create, there are databases (goal banks) of scripted goals and objectives (sub-tasks of goals). One can search the goal bank for items that can be inserted into a child’s IEP with a small amount of customization. Of course, I couldn’t resist digging through the databases to see what types of goals autistic children are being asked to meet.

It quickly became obvious to me that I, as a 45-year-old autistic adult, could not consistently meet many of the social and communication goals and objectives that autistic elementary school students are expected to achieve. As I kept digging, patterns began to emerge.  Continue reading Unreasonable Goals

Big Giant Giveaway: Books, Stim Toys, Chewy Jewelry

It’s been a year since I’ve done a giveaway and to make up for that long gap (and to celebrate the launch of Stimtastic) I’ve decided to give away a whole bunch of things this time.

First,  the rules:

  • To enter, do at least one of the following:
  1. Leave a comment on this post
  2. Reblog the Tumblr post announcing the giveaway
  3. Like or comment on the Facebook page status announcing the giveaway
  • Maximum of 3 entries per person (1 for a comment here, 1 for a reblog on Tumblr, 1 for a comment/like on the Facebook status)
  • The giveaway is open to everyone (over 18 or under 18 with parental permission), including those outside the US.
  • Giveaway ends Monday, November 24th at 11:59 p.m. EST
  • 10 winners will be chosen at random on November 25th. The first winner chosen will get first pick of the items. The second winner can choose from the remaining items and so on. The tenth winner will receive the remaining item.

Good luck!

Giveaway Items:

WINNER: Cecily Shaw 1.  2 Spinner Rings: Arrow and Infinity (your choice of size 6,7,8,9 or 10)

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WINNER: Pam Fikter 2. Chewable jewelry necklace and bracelet set #1 (your choice of colors):

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WINNER: Daniel Obejas 3. Set of 5 Building Block Highlighters

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WINNER: Gallonjug 4. Set of 3 Stim Toys

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WINNER: A. M. 5. “Nerdy, Shy and Socially Inappropriate” Book (Your choice of Paperback or Kindle version)

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WINNER: xkrisxcross 6. Thinking Putty (Choice of Blue, Green or Lilac) and Gel Ball

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WINNER: Leah Kelley 7. Bike Chain Bracelet (Blue/Silver or Black/Silver)

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WINNER: BLUE 8. Chewable jewelry necklace and bracelet set #2 (your choice of colors):

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WINNER: toxiccanary 9. Dog Fidget Necklace and Paracord Keychain (Your Choice of 4 Colors)

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WINNER: Mae 10. “I Think I Might Be Autistic” (Your choice of Paperback or Kindle version)

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Also, this will be the last substantial post about Stimtastic here so if you’d like to get notifications of giveaways, contests, etc. in the future, please go ahead and follow the Stimtastic BlogFacebook, Twitter or Tumblr.

Mindfulness in Miniature

This is my first attempt at writing a post using voice recognition software. For the past week I’ve been “training” Dragon Naturally Speaking. Or maybe Dragon has been training me.

You would think that voice-recognition software would be as simple as speaking (although that statement in itself may be an oxymoron for many of us). But the software is sophisticated enough that there’s a fairly steep learning curve–both in learning the commands and in learning to “write” by speaking. So far, I’ve primarily been using it for work tasks, which are straightforward and often scripted in nature.

Curiously, I’m finding that voice-recognition software makes the writing process both faster and slower. Faster, because my typing and in particular my ability to spell is hampering my writing considerably. Slower, because before dictating each sentence I have to pause and compose the words in my mind in a way that is very different from typing.

There’s always been something about typing that has felt like a direct connection between my brain and the words. Now, something is short-circuiting that connection. I’ve reached a tipping point where the effort to put the words into speech in order to create text is less than the effort required to type those same words. And this new process–both the relative ease and the slowness of it–has me thinking a lot about things like mindfulness and intentionality.  Continue reading Mindfulness in Miniature

Where Am I Going, Where Have I Been

Unlike the short story that the title alludes to, this post is about happy things.

August 2012

When I started blogging, it was scary to be writing about myself. I had no idea what me talking about me sounded like. At first I think I simply imitated the voices of other bloggers I liked, holding myself at arm’s length as a defense mechanism.

I probably shouldn’t have been as worried as I was. Few people read those early posts in real time. A lot of you have since mainlined the entire blog (in chronological order, no less), but at the time, I was mostly shouting in the wilderness.

There have been times when I’ve been tempted to go back and revise some of the early posts. I had little knowledge about autism and no right sounding as authoritative as I did. But I’ve let them stand as they are because I like the record they create and I like the evolution I can trace in my writing and in the way I’ve come to think about autism and being autistic. I’ve learned a lot in 26 months, some through research and self-examination, but just as much through the comments that so many of you have generously shared.

As the number of comments on each post has grown, I’ve come to see my writing as a conversation starter and I look forward to seeing what readers will add to my initial thoughts.

I’ve never been good at writing conclusively. Endings are my nemesis. Thankfully, blogging is suited as much to asking questions as to providing answers.  Continue reading Where Am I Going, Where Have I Been

one woman's thoughts about life on the spectrum

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