Tag Archives: diagnosis

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.

———————–

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.

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 am Asperger’s, Asperger’s is Me

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

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

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

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

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

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

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

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

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

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

In that place, there is only now.

Bandelier National Monument, New Mexico, Oct 2006

When Your Diploma Comes with a Diagnosis

My college diploma arrived today:

So official looking!

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

I got Asperger’s Syndrome.

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

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

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

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

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

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

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

A few of the key puzzle pieces:

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

Everything Becomes Illuminated on  a Random Winter Day

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

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

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

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

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

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

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

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

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

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

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

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

When Being a Good Girl is Bad for You

Increasingly, experts are realizing that Asperger’s in girls looks different from Asperger’s in boys. Some thoughts on what that means for girls on the spectrum . . .

I was raised to be a good girl. This meant, above all, being seen and not heard. Don’t bother the adults. Don’t make waves.

And this was mostly fine with me. As a child, I spent hours and hours alone. Some of my happiest memories involve going on long bike rides, exploring in the woods, and playing games in my room, all by myself. I remember quite a few fiercely contested games of Risk and Monopoly that pitted me against myself.

My parents never questioned what I did for hours in my room with the door closed. If I disappeared for the afternoon into the woods behind our house, their only concern was that I be home by five-thirty for dinner.

I don’t know what would have happened if I came home at six. I was a good girl and good girls followed the rules.

But the problem with being the good girl, especially if you’re a young undiagnosed aspie, is that good girls are invisible. Aspie boys tend to act out. They have problems with anger management. They’re defiant and oppositional. They’re not team players. They shrink away from competition and refuse to follow the rules.

Years ago these boys got slapped with labels like “juvenile delinquent” and “behavior problem.” Today, out of every ten children diagnosed with Asperger’s syndrome, eight will be boys and two will be girls.

The big question raised by this disparity is: are boys more likely to be aspies or are they just more likely to get diagnosed because their symptoms tend to fit the classic manifestation of AS?  Continue reading When Being a Good Girl is Bad for You