My Anxiety is Not Disordered

Bringing this post back for this month’s Down Wit Dat T21 Blog Hop

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I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.

Disorder implies that my social anxiety is irrational. Is it? Consider this:

“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)

Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.

blueanxiety

What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:

  • committing to a relationship
  • giving a major presentation for school or work
  • becoming a parent
  • meeting a partner’s family
  • starting a new job
  • learning to drive
  • flying on an airplane for the first time
  • traveling in a high crime area

When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD

So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

traffic lightRed Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated. Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:

  • the person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle
  • the person who lives with a partner and has lunch once a week with a close friend
  • the person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours
  • the person who chooses to spend time at home with family and only goes out for necessary errands or events
  • the person who works around people all day and likes to spend their evenings alone

The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone–NT or autistic–might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to–the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule–scheduling is essential for me to get through three days of company–and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing.  We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them.

Taking the CAM Face-Voice Battery

This week for Take-a-Test Tuesday I took the Cambridge Mindreading Face-Voice Battery (CAM) which is another test of the ability to recognize emotions in others.

The Cambridge Mindreading Face-Voice Battery (CAM)  tests recognition of complex emotional states. It consists of short audio and video clips in which actors convey 1 of 20 different complex emotions through either their voice or their facial expressions.

The theory behind the CAM is that autistic people are able to read basic emotions but have difficulty interpreting complex emotions. Basic emotions are the ones that we learn early in life: happy, sad, angry, surprised. Most people learn these by age 6.

Complex emotions are sometimes described as combinations of basic emotions or as basic emotions plus cultural conditioning. They include mental states like stern, intimate, guarded, admiring, submissive and vibrant. There are hundreds of complex emotions and it takes us years to learn them. Generally, most people can recognize the majority of complex emotions by the time they reach adulthood.

Robert Plutchik's Wheel of Emotions is one of many ways of thinking about the relationships between basic and complex emotions
Robert Plutchik’s Wheel of Emotions is one of many ways of thinking about the relationships between basic and complex emotions

According to the CAM creators, the emotional states presented in the clips are “higher order” emotional concepts:

  • 6 concepts from level 4 (concepts understood by typical 15–16 year olds)
  • 13 concepts from level 5 (understood by typical 17–18 year olds)
  • 1 concept from level 6 (words understood by less than 75% of typical 17–18 year olds)

The purpose of the test is to examine whether autistic people grasp these more complex emotional states. It includes both negative and positive emotions as well as subtle and intense emotional states. Each of the 20 emotions is repeated 5 times.

Taking the Test

The Face-Voice Battery has two parts. Part 1 consists of listening to 50 short clips of actors saying a phrase or sentence. You’re given 4 options for describing the emotional content of the clip. Part 2 consists of watching 50 3-5 second videos of actors silently portraying facial expressions. Again you’re given 4 options that describe the emotional content.

You can take the Cambridge Mindreading (CAM) Face-Voice Battery at aspietests.org. To begin, click on the The Cambridge Mindreading Face-Voice Battery – Part 1 (Voices) link. After entering your age and diagnostic status and accepting the terms, you can proceed to the voice clips. As you take the test, keep in mind that speed counts. In addition to a %-correct score, the test returns an “average time to answer” score. Part 1 took me about 10 minutes to complete.

Once you finish Part 1, click the “back to the homepage” link and then click the Cambridge Mindreading Face-Voice Battery – Part 2 (Faces) link to begin Part 2. Again, speed counts. This part took me about 10 minutes to complete as well.

Scoring the Test

I did well on this test–in fact, I matched the mean score of neurotypical females in the original research study. Here is my score:

You scored 90.0% in 5.7 seconds. Faces: 84.0% (42 correct) Voices: 96.0% (48 correct)

Here are the average scores from the study:

ASD Faces task: 32 correct (64%)
ASD Voice task: 35 correct (70%)
ASD Total: 68 correct (68%)

NT Faces task: 44 correct (88%)
NT Voice task: 43 correct (86%)
NT Total: 86 correct (86%)

I’m not surprised by how well I did on the voices portion of the test. “Voice data” is my primary means of reading social situations. It helped that the informational content of the phrases matched the emotional content of the voices. For example, when I heard “that is horrible” I took into account the information being conveyed by the statement as well as the tone of voice to settle on my choice of “appalled.” This is considered a “strategy” by the test creators, so basically, once again, I’m “cheating.” But it works, so hooray for adaptations.

The video clips were a mixed bag. I think I did better on the ones that had a dissimilar set of possible answers (i.e. appalled, vibrant, blank, or intimate) and the ones that I remembered to glance at the answer choices before the clip played.

As an experiment, for some trials I watched the clip and tried to form an answer before looking at the choices. On one video, I was certain the answer was “sarcastic” but that wasn’t one of the choices; I think the correct answer was “reassured.”

A few other random thoughts:

  • Am I the only one who thought most of the voice clips sounded like they were straight out of Dickens novel?
  • The use of live action videos is more realistic than static photos, but I still didn’t feel like the test results were reflective of my real life ability to read emotions.
  • I liked seeing the contrast in my voice vs. facial expression reading skills.
  • Some of the video clips made me incredibly uncomfortable to the point that I had to glance away.
  • I couldn’t find any data on the “time to answer” scores. From background reading about this type of test, I know that researchers often use the average time to answer as a metric to gauge competency. The assumption is that the longer it takes to answer, the more processing your brain is doing to produce an answer.

The Bottom Line

CAM feels more realistic than Reading the Mind in the Eyes, but it’s still far from an accurate test of the fluid way that emotions present in real life interactions.

Adult ASD: Preparing for Your Evaluation

Part 7 in the I Think I Might Be Autistic Series

As I mentioned previously, there are different ways of getting diagnosed. Depending on what route you choose, your evaluation may involve questionnaires, cognitive tests and/or a diagnostic interview.

My evaluation was done by a neuropsychologist, so I’m going to talk about that here. I hope other autistic individuals who’ve been professionally diagnosed will continue to share their stories in the comments to create a more diverse picture of what diagnosis can look like.

Neuropsychology is a field that looks at behavior in terms of brain function. Autism is a developmental disorder, not a mental illness, so diagnosing ASD is one of the areas that neuropsychologists specialize in. Clinical psychologists and psychiatrists who work with autistic patients will also use many of the same tests and procedures described here.

When I made my initial appointment, I was told that testing would take 4-8 hours and might be split over two or more appointments, depending on how fatiguing I found the tests.

A few days later I received a 17-page questionnaire in the mail. The instructions said to complete it and bring to my evaluation. The questionnaire covered personal and family mental health history, cognitive symptoms (memory, daily function, auditory/visual/balance, etc.), childhood development and an open-ended question about why I was seeking an evaluation.

I used the open-ended question to make my case. I started out with “I suspect I have Asperger’s Syndrome” and then listed my major symptoms as I understood them at the time: social awkwardness, rigidity, attachment to routine, intense interests, difficulty reading facial expressions and body language, clumsiness, etc. I tried to focus on the symptoms that fit the DSM categories first and then listed other less universally recognized symptoms after that.

Beneath the open-ended question was a set of check boxes that said:

Overall I think that there is:

  • nothing wrong with me
  • probably something wrong with me
  • definitely something wrong with me

wrongwithme

In true aspie fashion I checked the “definitely” box, crossed out “wrong,” wrote in “different,” then annotated it with a few descriptive sentences. In fact, I annotated a lot of the “ticky box” questions. By the time I was done, my questionnaire was a scribbled-on mess.

Whether you receive a history questionnaire or not, I strongly recommend making notes to bring to your appointment. The time you’ll spend with the doctor conducting your evaluation will be limited; it’s important to bring up everything you think will be helpful in getting an accurate diagnosis.

If you find speaking about your symptoms difficult, prepare a concise (no more than 1 page) written summary to give to the doctor at the start of your appointment. Autism causes communication difficulties. There’s nothing wrong with telling the doctor that you prefer to use a brief written description of your concerns as a starting point.

Most importantly, as you prepare for the appointment, try to relax. I know it feels like there’s a lot riding on the outcome, but all you have to do at the appointment is be yourself. This is one time when being your own hot mess of an autistic self is encouraged.

Preparing for your Evaluation

  • If the doctor’s office sends you a history and/or symptom questionnaire, take it seriously. Fill it out as completely as possible, providing specific examples where you can. Don’t hesitate to add additional information that you feel is relevant.
  • Make notes regarding what you want to talk about as part of your diagnostic interview.
  • If necessary, prepare a written summary of your symptoms/signs/traits for the doctor.
  • If you have questions, write them down and bring them to the appointment so you don’t forget.
  • Try to relax and remember to be yourself.

Up next: Adult ASD Evaluation – The Diagnostic Interview

Autistic People Should . . .

This post is part of today’s “Autistic People Should” flash blog where Autistic bloggers are writing about positive things that Autistic people should do. Why? Because if you type “Autistic people should” into either Google or Bing’s search engine query box, the autocomplete results–the most popular searches starting with those words–are disturbing and upsetting, especially if you’re Autistic or love someone who is.

Trigger Warning:  I’ve posted a screenshot of the text from Google’s autocomplete at the end of this post and as I said above, it may be very upsetting if you are Autistic or care for someone who is.

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Autistic people should: question everything.

When we’re given an autism spectrum diagnosis, we’ve also given a model of what it means to be autistic.

Question the model.

Start here:

A wordmap of Autism Spectrum Disorder diagnostic criteria
A wordmap of Autism Spectrum Disorder diagnostic criteria.  The larger the word, the more frequently it appears in the diagnostic definition.

What does your word cloud for autism look like?

Question the assumptions.

Is there a right way to play?

To learn?

To think?

To love?

To communicate?

Question the research.

Who says?

How do they know?

Who paid for it?

Now what?

Question the stereotypes.

Nonverbal headbanger?

Idiot savant?

Inspirational angel?

Boy genius?

Lovable eccentric?

Unloveable recluse?

High-functioning aspie?

Dangerous loner?

Question the experts.

How do they know?

Are they sure?

What if they’re wrong?

Question the language.

Disorder, deficit, disability, difference?

Cured, recovered, coping, adapting, passing?

Label, slur, identity?

Person with autism, autistic, Autistic, aspie, autie?

Locked in, trapped, uncommunicative, nonverbal, nonspeaking, unvoiced?

Question the hype.

Epidemic?

Tragedy?

Burden to society?

Really?

Says who?

Question the fundamental fabric of humanity.

What is empathy?

What is love?

What is communication?

Question

every

single

should

must

can’t

won’t

never

always

Question this:

An excerpt from promotional material for a college textbook about Autism.
This textbook author says that Autistic people don’t recognize that other people have minds.

and this:

The lead for an article in a UK newspaper.
This Uk newspaper devoted an entire article to an autism expert who wants us to believe that autism is an “exaggeration of male habits.”

and this:

Excerpted from the "signs of autism" at a popular autism information website.
This popular autism information website wants you to believe that Autistic children play the wrong way because they lack imagination and creativity.

and this:

Autistic people rarely get married or have children? That's what these experts at Yale and  want you to think.
Autistic people don’t get married or have children? That’s what these experts at Yale and UC-San Francisco want you to think.

Question everything.

Question what you read, what you hear, what you see, what you are told.

Question what you think.

Most of all . . .

Question the hate.

If you type "Autistic people should" into a Google search box, these are the results that Google suggests based the most popular recent searches.
If you type “Autistic people should” into a Google search box, these are the results that Google suggests based the most popular recent searches.

My “NO” Reflex

It’s Monday morning and The Scientist is off from work:

Him: Do you want to go to the diner for breakfast?
Me: No.

We never go to the diner on Monday. It’s not part of The Plan.

We’re hiking through a new trail system:

Him: That trail looks interesting. Let’s try it.
Me: I think we should stick to the route I planned.

I don’t even consider whether the other trail might be more interesting. It’s not in The Plan.

We’re driving home from a quick trip to the mall on Sunday afternoon:
Him: Let’s go to the movies!
Me:  . . . .

That’s the sound of my head exploding. The Scientist, you see, is very spontaneous. I am not. He can decide on a whim to go to the movies. He’ll drive to the theater, pick something that looks decent and is playing soonish, and buy a ticket. Then he’ll find a way to kill time until the movie starts. And he might enjoy the movie or be a little bored or end up thinking it sucks, but he’ll have a good time regardless.

I don’t understand this. At all.

A movie is not part of my daily routine. It requires contingency planning. It raises many many questions that have to be answered before A Plan can be put into place. What will I see? When? Where? Can I get there in time? Will I have to wait? Will I be early enough to get The Right Seat? Do I want popcorn? How long will the movie run? Should I eat before? After? Where? How much time will that require?

And my response to all of these questions?

noNO!

Do not want.

Too hard.

Let’s go home and sit quietly and think about maybe going to the movies tomorrow. When we have A Plan.

Yes, that’s much better.

I have a very strong NO reflex.

Do I want to do something that isn’t part of The Plan? NO

Do I want to unexpectedly deviate from the schedule? Serendipitously try something new? Alter, vary or disrupt my routine at the last minute? NO, NO , and NO

I don’t cope well with unexpected anything. With adequate warning, I manage change pretty well. I vary my schedule, go new places, and try new things without excess trepidation. I need enough lead time so I can mentally prepare myself but once I have a contingency plan, all systems are go.

Without enough warning, however, my instinctive response to anything not in The Plan, is NO. Often an emphatic and even angry NO. Yes, unplanned change makes me irrationally angry.

I don’t stop to consider whether the change might be better than what I’ve planned. I don’t weigh the pros and cons. I’m not easily persuaded. In fact, the more you try to persuade me, the more panicked I’ll start to feel.

And the stupidest part of my NO reflex is that the change often is better. Going out for breakfast with my husband on a Monday morning? That’s actually a great idea. The food would be good. We’d have enjoyable relaxing conversation. What’s not to like about it? Why does the fact that it’s Monday preclude me from enjoying something, well, enjoyable?

There is no good logical answer to this. My fictional Plan isn’t an etched-in-stone prescription for a happy life. It’s a coping mechanism. At times it’s helpful and at times it’s an impediment.

I suspect my NO reflex is related to the weak central coherence that’s a part of Asperger’s. Aspies tend to see the details where others see the whole. The Scientist perceives going to the movies as one cohesive thing. He’s a top-down kind of guy who expects the details to fall into place along the way.

Me? I see going to the movies–or any unexpected event–as a massive overwhelming collection of details. Each detail seems to set off a cascade of more details, creating a complex matrix of endless details, into which I’ll be sucked and never return . . .

Okay, so it’s not quite that bad. But it can feel that way at times.

Being Okay

Consciously thinking about my resistance to unexpected change has led to the idea of “being okay” with things.

When someone asks me to do something unexpectedly, I momentarily shush the NO reflex. I let my initial panic at this unexpected request subside, then I try to consider the options objectively.

Breakfast at the diner on a Monday?

okayEvidence in favor: spending time with my husband, good food, a relaxing start to the week, variety can be refreshing

Evidence against: cuts into my planned work time, higher fat/sugar breakfast might affect my mood temporarily, there may be some sensory overload to deal with

As much as I’m tempted to, I don’t allow myself to include “not in The Plan” as evidence against anything. I remind myself that I can “be okay” with doing something different. I don’t have to feel uncomfortable with an out-of-the-ordinary event.

I’ll admit, this doesn’t always work. Often I’m 80% okay and 20% uncomfortable. But that’s better than not going and beating myself up about it, which is also a strong reflex. It’s not like I enjoy raining on everyone’s parade. The other option–the one I used to force myself into–was reluctantly going and being 100% uncomfortable. Given how unhealthy both of my previous responses were, 20% uncomfortable looks pretty good.

I’m not ready for any unplanned trips to the movies, but I’m happy with the day-to-day decisions I make lately that aren’t an automatic NO. Sometimes I say yes and sometimes I say no. Each response is a conscious, mindful decision, not a reflexive reaction.

I used to feel guilty about my constant string of NOs. There were many and they had a negative effect on my life. I didn’t want to be a terminal spoilsport. I didn’t want to be so rigid about everything.

It wasn’t until I started to understand more about Asperger’s that I was able to make sense of my NO reflex. Before, I saw myself as negative and controlling. A lot of other people saw me that way too. Now I know that difficulty with change is an aspie trait and one that I don’t have to be confined by.

I can choose to say yes and I can choose to say no.

It’s not as simple as it sounds, but it’s worth the effort and the more I practice, the more natural it’s becoming.

Taking the Friendship Questionnaire (FQ)

This week I took the Friendship Questionnaire (sometimes called the Friendship Quotient).

The Friendship Questionnaire (FQ) was developed in 2003 as part of Simon Baron-Cohen’s ongoing quest to prove his “extreme male brain” theory of Asperger’s. Consequently, the FQ measures a very specific model of friendship to prove a point about people on the spectrum.

The developers of the FQ say that an individual will score highly on it if they:

  • enjoy close, empathic supportive friendships
  • like and are interested in people
  • enjoy interaction with others for its own sake
  • find friendships important (Baron-Cohen and Wheelwright, 2003)

The questions are based on assumed gender differences in forming friendships. The FQ developers hypothesized that NT women would score highest, with men scoring slightly lower than NT women, and ASD individuals of both genders scoring significantly lower than NT men.

The average FQ scores from the 2003 study were:

  • NT females: 90.0
  • NT males: 70.3
  • ASD females: 59.8
  • ASD males: 53.2

The fundamental basis for the gender-difference hypothesis seems to be that men and people on the spectrum prefer activity-based friendships. Neurotypical women, on the other hand, are assumed to prefer interaction-based friendships, where the act of connecting is of primary importance.

Since every friendship I’ve had as an adult has grown out of a common interest, it’s safe to say I fall into the activity-based preference. Honestly, I have no real idea how friendship works in most cases, so let’s take the test.

Taking the Test

You can take the FQ at the Aspie Tests website. Click the link for the Friendship Quotient and then complete the first three questions (you don’t need to create an account unless you want to) and click the submit button to start the quiz.

There are 34 multiple choice questions.

I found some of these questions hard to answer because there was no “neither” option. For example, on #6 I literally don’t have a wide enough social circle that it requires me to choose between asking someone to meet first or thinking of an activity then choosing a person to do it with. #9: I have no idea. Neither? Why is there no neither option?!

For some questions, I ended up choosing answers based on how I’ve interacted with friends in the past because I couldn’t come up with a current example to base my answer on.

Scoring the Test

After submitting your answers, you’ll get your FQ score. The possible scoring range is 0 to 135. I got 39.

Average scores by gender for the FQ (aspietests.org)
Average scores by gender and neurotype for the FQ (aspietests.org)
FQ score distribution by neurotype
FQ score distribution by neurotype (aspietests.org)

I’m not sure what to make of my 39. I’m not surprised by it. Going down the list of qualities that the FQ tests for:

  • I enjoy close, supportive friendships, but I don’t need more than a couple at a time to feel that I have supportive connections in my life.
  • I don’t really like or have an interest in people as a general rule (sorry, human race).
  • I don’t generally enjoy interaction with others for its own sake, which is different from not enjoying interaction with others at all.
  • I find friendship moderately important, but again I don’t need many friends to feel like I have a satisfactory level of social interaction in my life.

The Bottom Line

The research I read on the FQ doesn’t imply that a low FQ score is “bad”, which is good to see, because I think the FQ is testing for a very specific model of friendship. The research does say that those with low FQ scores tend to have high AQ and low EQ scores.

Adult ASD: Seeking a Professional Diagnosis

Part 6 in the I Think I Might Be Autistic Series

—–

There are a number of reasons that an adult might want to seek out a diagnosis by a professional:

  1. To become eligible for services
  2. To obtain supports or accommodations at work or school
  3. To increase the likelihood that therapy or counseling takes aspie/ASD traits into account
  4. For peace of mind and/or validation of a self-diagnosis

Primarily, I fell into the last category. I needed to know that it wasn’t “all in my head” and getting a diagnosis by a professional seemed like the most conclusive way to do that. However, if I ever go to graduate school (or–gasp–get a job), I like the idea of having an official diagnosis to back up any requests for supports that I might choose to make.

So, how do you go about getting evaluated for Asperger’s or autism as an adult? First, be prepared to face some significant challenges:

  • You’ll need to find a psychologist, psychiatrist or neuropsychologist who does adult ASD evaluations. Depending on where you live, this task ranges from difficult to nearly impossible.
  • You’ll probably have to pay for the evaluation yourself. Most insurance companies in the US don’t cover adult ASD evaluation. Be forewarned, a full evaluation can cost anywhere from $1500 to $3000. I’ll talk about other, potentially less costly options below.
  • The process of getting diagnosed may take months or years and you may encounter misdiagnoses and misinformation along the way.

With all of the discouraging stuff out of the way, let’s look at some of the options for getting diagnosed:

Finding a Provider

A good place to start if you’re in the US is the Pathfinders for Autism Providers Directory. Plug in your zip code, how far you’re willing to travel (further will give you more options–I chose 50 miles when I did my search) and select the “Getting Diagnosed” option in the Categories list on the right.

You’ll be given a (hopefully) long list of results to comb through, including psychologists, psychiatrists, neuropsychologists and licensed clinical social workers. I know of people who have been diagnosed with ASD by all of these types of professionals except the last. Read the provider descriptions, visit their websites and/or call providers to narrow down your results to those who do adult evaluations.

Some other options for finding providers who do adult evaluations:

  • Word of mouth: If you can locate autistic individuals or parents of autistic children in your area, ask them for referrals.
  • State, provincial or local autism group: Google “[your state/county/province/major city] autism services” and look for .org website addresses in the results. You should find at least one local nonprofit or community autism services organization in your area. Call and request a referral for an adult evaluation. If you find more than one, call all of them. Different organizations have different missions and their resource lists vary. You can also find a good but not exhaustive list of state-by-state resources on the GRASP website.
  • Local university: Call the medical school or teaching hospital for a large public university in your area and speak with someone in the neurology department. You may get transferred around a lot and have to explain your question repeatedly but this can be a way to find an adult specialist if you’re coming up empty in other places.

The Role of Your Primary Care Physician

Surprisingly, one source that probably won’t be helpful is your primary care physician. I explained my concerns to my doctor and his reply was to offer to write me a prescription for a beta blocker for anxiety. When I turned that down, he suggested counseling.

What he didn’t suggest was that I get evaluated for ASD. His approach was focused on treating the symptoms; he seemed to think the source of the symptoms was irrelevant. That’s not to say he’s a bad doctor. He probably wasn’t trained to handle this type of question. Autism is still seen by many as a childhood disease.

If you live outside the United States or if your insurance covers ASD evaluation, a referral from a primary care doctor might be required to qualify for insurance coverage (or rebates or whatever form subsidized health care takes in your country). In this situation, you may need to approach your doctor armed with information about adult autism/Asperger’s.

This is where your discovery process and perhaps self-diagnosis will come in handy. While there is increasing awareness of the existence of undiagnosed adults, many primary care doctors aren’t well-informed about the subject. You may find that you’re more knowledgeable than your doctor. Don’t be afraid to advocate hard for a referral.

Lower Cost Alternatives to a Private Provider

If the cost of a full evaluation is prohibitive, there are other options to consider:

  1. Ask your community autism services organization if they have a staff or consulting psychologist who can do an evaluation. Depending on your financial situation, they may offer this service at reduced cost or as part of their services to the community.
  2. Some universities with teaching hospitals or clinical centers offer ASD evaluation conducted by supervised graduate students on an ability-to-pay basis.
  3. You may be able to obtain a diagnosis as part of ongoing therapy with a psychologist or psychiatrist. Sometimes a therapist will raise the possibility of ASD or be willing to commit to a diagnosis on the basis of information you share during therapy sessions.

(If you obtained your diagnosis in a way that I haven’t mentioned, please let me know in the comments and I’ll update this section with additional options. I apologize for the lack of information about getting diagnosed outside the US. Hopefully commenters can help out there as well.)

Making the Appointment

After doing extensive research, including everything listed above plus some fruitless things not included here, I came up with exactly two possibilities within a 50-mile radius of my major metropolitan city.

Armed with my very short list, I called the first provider on it–a psychiatrist whose name I’d obtained from a major university. This didn’t go as well as I’d hoped. The doctor was extremely condescending and basically said, “Adult evaluation is really expensive and I doubt you can afford it and why do you want it anyway?”

I gave a brief stuttering answer, hung up the phone shaking, and spent two weeks working up the courage to call the second and only other name on the list.

The second option was a private neuropsychology practice specializing in cognitive testing for children and adults. To my great relief, the person who answered the phone didn’t find it strange that I was calling to schedule an evaluation for myself without any sort of referral. She didn’t treat me like an idiot or become impatient with my questions.

I gathered the information about the testing process and said I’d call back after thinking about it. The evaluation was going to be a big investment and taking that final step was intimidating. Bizarrely, my biggest fear was that the tests would prove I didn’t have Asperger’s or that the psychologist would think I wasn’t autistic enough to merit a diagnosis. Then I’d be back to having no explanation for all these atypical things about me.

After a couple of days of thinking it over, I decided that I definitely wanted to go forward. My husband was supportive of my decision and offered to come with me to the appointment if I wanted him to. I didn’t take him up on the offer, but it felt good to know that he was 100% behind me.

Going At Your Own Pace

Whatever path you take to finding someone who can evaluate you, know that it won’t likely be a direct route. It’s perfectly okay to feel like the biggest first step you can manage is to bring up a list of results on the Pathfinders website. Maybe your next step is reading about the providers and a few days later you might gather the energy to start making a list of providers to call. It may take weeks or months to start making those calls and yet more months to commit to meeting with a professional or scheduling an evaluation.

Take your time. Ask for support from a trusted person in your life if you feel comfortable doing so. Getting diagnosed can be an uphill climb. Pace yourself.

Finding a Professional who Works with Adults

  • Be prepared to do a lot of research.
  • Look for psychologists, psychiatrists or neuropsychologists who are experienced in diagnosing adults with ASD.
  • If you have to get a referral from a primary care doctor, be prepared to advocate for yourself.
  • If the cost of diagnosis is prohibitive, look for alternatives to private providers.
  • Be patient and go forward at your own pace.

Next in the series: Preparing for your ASD Evaluation

Scenes from an Autistic Childhood

Through the magic of old home movies (actually DVD transfers of grainy super 8 footage), I’ve been able to study bits of my childhood, looking for typical early childhood signs of autism.

Hindsight is not only 20/20 it’s very entertaining. I decided to liveblog scenes from my autistic childhood, so you can share in the fun.

Let’s go back in time . . .

DVD #1: The Early Years

Through most of the first disc I look like an average baby and toddler. Maybe a little hard to engage at times. I’m often staring intently at something off camera. I’m interested in objects as much as people. Give me a baby doll and I’ll probably hug her. Or wield her like a club. It’s a toss up.

I’m not the most expressive baby. I more often look panicked or confused or grumpy than happy. Hmmm, when I do look happy it tends to be the shrieking, hand flapping sort of happiness.

Then this happens:

filmstrip1
My dad is on the floor in front of me, just outside the cropped frames. At first he’s making noises and I’m laughing. After a few seconds of that, I look up toward the camera, suddenly oblivious to him. Frustrated, my dad puts his hand between me and the camera. Note the unchanged expression on my face before and after. He shakes my shoulder, tickles me, calls me, tries the hand thing a couple more times. Nothing seems to get through to me. I’m still staring at whatever’s caught my attention when the frame goes dark.

Doesn’t respond to his or her name or to the sound of a familiar voice.

Soon I see more clues:

51:55 – I’d rather sit and bounce on my ball than throw or kick it.

53:01 – The first of many shots of me happily swinging on my backyard swing set.

filmstrip2
54.35 – I’m intensely interested in hammering nails into a piece of scrap wood. With a real hammer! There’s an entire reel of hammering. Perseveration R Us.

58:38 – A little hand flapping for the goats at the petting zoo.

1:04:14 –  Here I am getting a haircut. I loved going to the hairdresser because it meant I got to play with the rollers and hair clips. And by play with, I mean sort by size and color.

Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways.

DVD #2: Vacation!

Being away from home causes me to stim nearly nonstop. In the first twenty minutes, I’m 3 to 4 years old and still an only child. I wonder if being the first child–with no siblings to compare my behavior to–makes my autistic traits less obvious to my parents.

3:40 – Here I am rocking back and forth in my stroller at Santa’s Land.

5:21 – My parents prompt me to wave to the camera. Again. I rarely wave unless they tell me to.

Uses few or no gestures (e.g., does not wave goodbye)

8:12 – An entire reel of me sitting beside my inflatable pool, washing the grass off my feet. I’m still doing it when the camera shuts off. I seriously did not like having grass stuck to my feet. Or grass in my pool.

9:40 – Happily swinging on a porch swing.

9:52 – Really happily swinging on a chain link fence. Okay, more like happily full body slamming the chain link fence.

Flaps their hands, rocks their body, or spins in circles

10:39 – Staring intently at an animatronic display. So intently that I have my face pressed flat up against the glass.

11:40 – Swinging on a glider. A disproportionate amount of these movies are of me swinging on things.

filmstrip4
11:55 – Stimming with Santa! Here’s how my 4-year-old visit with Santa goes: I get on his lap. I sit facing away from him and never once look at him. I fiddle with the candy cane wrapper in my hand, examining it like it’s the most interesting thing I’ve ever seen. Santa says something to me. I pretend he doesn’t exist. I fidget with the wrapper some more. Santa says something and waves at the camera. I enter a state of serene bliss in which nothing exists but the wrapper. Santa waves some more. Santa tries to take away my candy cane wrapper. The screen abruptly goes dark.

Exhibits poor eye contact

12:42 – More rocking, this time while posing in front of a statue of a giant pig.

12:56 –  More intense staring at animatronic gnomes.They’re rocking gnomes. I love them. In fact, I love them so much, I’m rocking in time with them.

13:20 – More staring. This time at dwarves.

14:18 – Here I am rubbing Humpty-Dumpty’s egg-shaped body. Over and over again, my parents pose me on or next to something and I immediately start rubbing my thumb or palm over the closest surface.

Engages in repetitive gestures or behaviors like touching objects

15:49 – Swinging from the rope of the school bell in an old fashioned schoolhouse.

16:32 – Bouncing up and down with the White Mountains in the background.

You get the idea. Ten more minutes of vacation footage and I’m constantly in motion. Bouncing, rocking, fidgeting with my windbreaker zipper, kicking my feet, flexing my knees, jiggling my feet, rubbing surfaces, hand flapping.

Moves constantly

I’m thinking it’s time to shut the DVD off, assuming I’ve made my point, when I see my sister do something I haven’t done once in more than 90 minutes of video: she points. She’s about a year old, and she’s pointing at the petting zoo animals. That’s when it hits me. I have one of the classic early childhood autism symptoms–a failure to point at objects.

Doesn’t point, wave goodbye or use other gestures to communicate

Soon we’re at Disney World with a family friend. She and my sister point again and again at things they’re excited about. I don’t point at anything. Not once.

30:06 – I’m about six here and I’ve learned to wave at the camera without being reminded. I’m riding on a carousel and wave at the camera every single time I go by. Yep, I’ve got the waving thing down good.

35:36  – We’re at Gettysburg. I’m around seven years old. My mother and sister are posing by a canon, waving at the camera, chatting away. I’m climbing on the canon, rubbing the canon, pretending to ride on the canon, paying no attention to them or the camera.

Appears disinterested or unaware of other people or what’s going on around them

It’s interesting to see footage of my sister and I at similar ages. I see how much more likely she was to engage with the camera, to wave spontaneously, to be smiling or talking or paying attention to the people around her.

I also see that I took a lot of cues from her. She’s four years younger, but at times–like when we’re interacting with characters at Disney World–I’m obviously watching her and following her lead.

And now that I’m no longer the sole focus of the camera’s attention, I’m a lot more likely to just wander out of the frame.

DVD #3: A Slew of Holidays with a Dash of Empathy on the Side

12:10 – Back in time again, to my 2nd birthday party. It’s a huge one. Every cousin, aunt, uncle and grandparent wedged into our basement rec room. I’m looking a little overwhelmed, circling a pole in the background as my cousins mug for the camera. When it’s time to blow out the candles I bravely poke a finger into the icing, lick it off my finger and immediately grab a napkin to clean my hand. Some things never change.

17:51 – Halloween. I’m six years old and for the first time I see evidence of my inability to tell if anyone is paying attention when I’m talking. As I scoop the seeds out of my pumpkin I’m rambling on about something to my sister who is too young to understand and my mother who is bustling around the kitchen, not even in the frame half the time. I’m blissfully undeterred.

Tends to carry on monologues on a favorite subject

20:12 – A bunch of Halloweens flash by. I’m Raggedy Ann. I’m a nurse. I’m a cat. Every costume has a stiff plastic mask which I pull off repeatedly. After yanking off the cat mask, I tug at my hair with both hands. Even today, my single most vivid memory of Halloween is the warm wet sensation of plastic against my face as my breath condensed on the inside of those masks.

29:50 – It’s snowed! My eighteen-month-old self is skeptical. I touch the snow with one mitten. Look at my hand. Immediately begin flapping. Cut to a shot of me a few months later, enjoying a fine spring day by toe-walking up the driveway. Yet another thing I’d say I never did if I hadn’t seen it here.

filmstrip9
32:50 – I’m sitting on the couch with a doll. My parents have mounted a light on the camera to improve their movies. I peek toward the camera, grimace in shock (or pain?) and close my eyes. I not only don’t look at the camera again, I turn my doll’s head away too. Empathy! Does it still count if it’s for an inanimate object?

May be unusually sensitive to light, sound and/or touch

40:19 – My sister and I are playing with my dolls in my room. By playing I mean I’m lining them up against the wall by height while preventing her from touching them. She enjoys this about as much as you’d expect a toddler to.

Obsessively lines up or arranges things in a certain order.

Looking back at these old films through the lens of autism is really enlightening. I had telltale signs of Asperger’s syndrome at a time when AS didn’t exist. I don’t remember much of what I’ve related here, but I do remember being a generally happy kid in my preschool years. Because I didn’t attend nursery school or daycare, I guess spent my first five years in a bit of a bubble, happily stimming my way through Santa’s Land.

Was I a happy kid or what?
Was I a happy kid or what?

Signs of Autism in Early Childhood

While I’ve highlighted many of the early signs of autism in my observations of my younger self, each child is different. You can find comprehensive lists of early signs and symptoms at  Mayo Clinic: Autism Symptoms and/or the CDC’s ASD Signs and Symptoms.

Two-Factor Imagination Scale (TFIS) Test

This week I took the Two-Factor Imagination Scale (TFIS) test. It was developed to identify the predominant imagination style used by alexithymic and non-alexithymic individuals. I have a couple of questions at the end of this write-up for those who take both TFIS and the Alexithymia Questionnaire.

Imagination–or the alleged lack of imagination in both autistic and alexithymic individuals–seems to be a hot topic around here lately.

Impoverished imagination is often included in the list of traits for alexithymia. Restricted imagination isn’t explicitly included as a diagnostic item for Asperger’s or autism, but it is part of the common ASD stereotype.

People see autistic kids lining up Hot Wheels or sorting Legos by color and assume there isn’t a whole lot going on in the imagination department. As someone who spent a lot of time in organizational-type play as a kid, I can assure you that I had a vivid imagination.

The thing is, it mostly took place inside my head. All that time I spent wandering around aimlessly in the yard or staring off into space? I was often playing with my imaginary friend Will, pretending to be somewhere else entirely. Will and I spent a lot of time on other planets because he was modeled on Will Robinson from “Lost in Space.”

I didn’t need toys to act out my imaginary scenarios. The possibilities that existed in my mind were more interesting than the pretend food my friends wanted to pretend cook or the pretend store they liked pretend shopping at. Sometimes I joined in, but often it just seemed like a less interesting version of real life. I get bored really easily. Picking some berries and pretending to cook and eat them didn’t hold my attention for long.

Spontaneous vs. Controlled Imagination

The Two-Factor Imagination Scale questions are supposed to gauge whether you have a more spontaneous or more controlled imagination process.

  • Spontaneous imagination is defined as effortless, surprising and instantaneous. For example, you’re washing the dishes and suddenly have a great new idea for a drawing. It feels like your idea literally “came out of nowhere.”
  • Controlled imagination is defined as a process that is consciously initiated, guided and terminated. For example, you’re washing the dishes and consciously decide to think about how to resolve a conflict with your roommate. You intentionally stay on task, brainstorming ideas and refining until you have an answer, at which time you stop thinking about it.

That’s not to say that spontaneous imagination is always creative while controlled imagination is always practical. You could suddenly have the perfect solution to your roommate crisis appear out of nowhere. You could also intentionally brainstorm and plan a new drawing.

The theory behind the TFIS is that people with high alexithymic traits are controlled imagination-dominant. The speculation about imagination in autistics is similar–that our imaginations are less flexible or less productive when it comes to generating novel ideas.

While the TFIS isn’t a measure of how imaginative an individual is, it may shed some light on how we use our imaginations. Keep in mind that neither type of imagination is superior–they simply represent different thinking styles.

Taking the Test

You can take the test at Aspie Tests. Once you click the “click here to start” link, you’re taken to a page that asks for age, gender, and diagnostic status. You also have to tick the box agreeing to the terms, but you don’t have to fill in the user name info.

TFIS consists of 22 statements, which you  rate as “more often true” or “less often true”.

I had a lot of trouble choosing an option for many of the statements because I regularly have both controlled and spontaneous imagination experiences. I found myself answering questions in ways that directly contradicted each other, which got frustrating.

Once you’re satisfied with your answers (or can’t stand to look at the questions any longer) click the “Get Results” button to get your score.

Scoring the Test

There are three possible outcomes:

  • equal to or less than 45 = low spontaneous imagination
  • 46 to 59 = proportionate spontaneous/controlled imagination
  • equal to or greater than 60 = high spontaneous imagination

I scored 56.0 (proportionate spontaneous/controlled imagination), which isn’t surprising given how contradictory my answers felt. I think I use both types of imagination in tandem. Spontaneous ideas provide the start of a creative project or enrich the details. Controlled imagination fills in the gaps.

The Aspie Test site provides some interesting data on the scoring page. If you look only at the averages, it looks like people with ASD or suspected ASD have low spontaneous imagination and NTs have proportionate spontaneous/controlled imagination.

Average scores broken down by gender and neurotype
Average scores broken down by gender and neurotype

However, if you look at the graph, the data distribution isn’t “normal” which means the average scores don’t represent the majority of the people in each group. Look at where the yellow line peaks: the largest grouping of NT scores is at 40 (low spontaneous imagination) and the second largest is at 60 (high spontaneous imagination) making the average score of “proportionate” completely meaningless because the majority of NTs scored either low or high, not proportionate.

Distribution of scores by neurotype
Distribution of scores by neurotype

The same holds for the ASD scores. There’s a peak at 45 (proportionate) and a larger peak at 25 (low). The suspected ASD scores are literally all over the map, with no clear peak.

The Bottom Line

I’m struggling to draw any conclusions from this test, so I have questions for those who took it and would like to share:

  • How hard was it to choose answers that felt accurate?
  • Was your score surprising or what you expected?
  • Did you TFIS score “agree” with your alexithymia quiz score? (high alexithymic = low spontaneous imagination)

A Little Perspective on Perspective Taking

Over and over again I’ve read that people on the spectrum struggle with perspective taking. I’ve even written that my own perspective taking skills suck.

I’m about to take that back.

This morning I was reading an article about teaching Autistic children. It emphasized that teachers are more effective if they take the perspective of the children they teach.

My first thought was can an allistic (non-autistic) teacher truly take the perspective of an Autistic child? They can try. They can educate themselves about autism and autistic traits. They can observe Autistic people and create situation-based rules. They can make assumptions about what an Autistic child is thinking or why they are behaving in a certain way. They can ask Autistic individuals for input and apply that input to their interactions with their Autistic students.

But they can never, ever truly take the perspective an Autistic child. Why? Because they aren’t Autistic. They can’t know what it feels like to be Autistic.

Do you see where I’m going with this?

When you think about it that way, Autistic people aren’t any more impaired than allistic people in perspective taking. We can take the perspective of other Autistic people quite easily.

It’s taking the perspective of the other 99% of the population that’s challenging. Why? Because allistic thinking doesn’t come naturally to us, no more than Autistic thinking comes naturally to an allistic person.

Experts say that Autistic people don’t realize that others have thoughts that are different from their own. If we’re talking about Autistic adults, this is just silly. Of course we know that other people have thoughts that are different from our own. We don’t always have a good idea what those thoughts (or feelings or motivations) are; for better or worse, we make assumptions based on our own thoughts, feelings and experience.

Allistic people do the exact same thing. Luckily for them, the majority of people around them are also allistic. By default, the odds are quite high that they’ll make a correct assumption about another person’s perspective based on their own perspective. And when a non-autistic person makes an error in perspective taking, we don’t say they’re impaired, we call it a misunderstanding.

If an allistic person tries to take the perspective of an Autistic person based on their own thoughts, motivations and experience, the results can be wildly off the mark. A good example is when teachers and caregivers treat meltdowns as an intentional behavior designed to elicit a specific response. Equating a meltdown with a typical temper tantrum is a massive failure in perspective taking. So much so, that from an Autistic perspective it would be funny if it wasn’t so sad and harmful.

If 99% of the population were Autistic, it would be easy to label the allistic minority “impaired” when they failed to instinctively grasp why their family members all regularly had meltdowns or why everyone on the bus except them was stimming or why their new landlord communicated by typing instead of speaking.

Does that sound like a scary world to live in? I suspect for some it might. It’s hard being surrounded by people whose behavior you don’t understand.

Welcome to the Autistic experience.

We are not born instinctively understanding the allistic world, any more than allistic people are born instinctively understanding the Autistic experience.