All posts by musingsofanaspie

Scenes from an Autistic Childhood

February 14, 2013 musingsofanaspie 31 Comments

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.

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.

Asperger's Tests

Two-Factor Imagination Scale (TFIS) Test

February 12, 2013 musingsofanaspie 67 Comments

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

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.

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)

Aspie Traits, Communication

A Little Perspective on Perspective Taking

February 11, 2013 musingsofanaspie 43 Comments

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.

Diagnosis

Adult ASD: Self-diagnosis or Professional Diagnosis?

February 9, 2013 musingsofanaspie 57 Comments

Part 5 in the I Think I Might Be Autistic Series

Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.

This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:

Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.
Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.

So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.

(click on the graphic for a larger version)

Here are some additional steps you can take to verify, challenge or test out your belief/suspicion that you’re on the spectrum:

Look at the DSM and/or ICD criteria for ASD (DSM-IV-TR criteria for Asperger’s and ASD, DSM-V criteria for ASD,ICD-10 criteria for Asperger’s and ASD).
Be sure you understand what each of the criteria means. ASD criteria manifest differently in adults than in children, so look for examples of adult traits when considering whether the diagnostic criteria applies to you. It may also be helpful to think back to your childhood and try to determine whether you met the early signs of autism.
Read books on the subject, both nonfiction (like The Complete Guide to Asperger’s Syndrome) and personal narratives (like Pretending to Be Normal or The Journal of Best Practices).
Read about the experiences of Autistic adults (scroll to the bottom of the linked post for a list of Autistic bloggers). If possible, talk with one or more Autistic adults. Comparing experiences with diagnosed adults can be validating. Also, there are many Autistic adults online (Tumblr, Twitter, Facebook, bloggers) who are happy to answer questions about specific aspects of autism and being autistic. Just keep in mind that Autistic adults are people too and we have a broad range of opinions as well as differing comfort levels when it comes to sharing our personal experiences.
Make a realistic assessment of your AS/autistic traits based on your reading.
Talk with one or more trusted persons in your life about your self-assessment. Do they see the same traits that you’re perceiving? Share a list of ASD traits (female ASD traits) with them. Do they see traits that you haven’t considered?
If you have access to childhood materials like report cards, school work, a baby book or old home movies/videos, review them in light of the childhood symptoms of AS/autism.
If possible (and if you feel comfortable) ask your parents about your childhood. If you don’t want to frame your questions in terms of autistic symptoms, you could simply ask things like “Did my teachers say I [did X or behaved like Y]?” or “Do you remember me doing [X, Y or Z] when I was a toddler?”

As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.

By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.

Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.

Weighing Self- vs. Professional Diagnosis

Obtaining a diagnosis as an adult can be very difficult.
Not everyone needs or wants a professional diagnosis.
Self-diagnosis is widely accepted in the autism community when done with diligence.
Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.

Next in the series: Seeking a professional diagnosis

Asperger's Tests

Taking the Alexithymia Questionnaire

February 5, 2013 musingsofanaspie 81 Comments

This week for Take-a-Test Tuesday we’re taking the online alexithymia questionnaire.

Alexithymia refers to people who have difficulty identifying and describing emotions as well as differentiating between physical and emotional sensations. It’s not a formal diagnosis, but a way of describing a common set of experiences related to emotional dysfunction.

Some descriptions of alexithymia also include impoverished imagination and a tendency toward externally oriented (concrete) thinking. I found it interesting that both studies I cite below omitted these last two characteristics. Many of you who commented on the emotional dysfunction post last week questioned the inclusion of impoverished imagination, saying that you personally felt the opposite was true. I have to agree with this. My imagination is, if anything, overactive. Perhaps there is an autistic subtype of alexithymia?

Alexithymia is extremely common in autistic individuals. About 50% of people diagnosed with ASD have severe alexithymia, however nearly all people on the spectrum experience it to some degree. Among the general population, about 10% fit the alexithymia profile and parents of autistic children are more likely to be alexithymic than parents of nonautistic children.

When it comes to social communication, the line between autistic traits and alexithymic traits is blurry. Two recent studies (Bird et al, 2010 and Silani et al, 2008) suggest that alexithymia, not ASD, is responsible for impaired affective empathy.

The 2008 study looked at brain activity in autistic and nonautistic people with and without alexithymia. It found a correlation between a person’s level of alexithymia, brain activity in one of the regions believed to be responsible for identifying one’s own emotions, and scores on an empathy questionnaire. This was true of both the autistic and nonautistic participants, suggesting that impaired processing of emotion, not autism, is the source of impaired affective empathy.

The brain uses the same neural pathways for perceiving and interpreting our own emotions as well as the emotions of others, so it makes sense that if we cannot process our emotions easily, we’ll also struggle to process emotions demonstrated by others..

One question that remains unanswered is why autism and alexithymia occur together so frequently.

Many commenters on last week’s post recognized themselves in my description of my own emotional dysfunction, so I thought it would be interesting to take the Online Alexithymia Questionnaire. While not a clinically recognized measure of alexithymia, it is based on commonly used clinical screening questionnaires.

Pros and Cons of the Online Alexithymia Questionnaire

Pros

Self-scoring
Provides subscale scores with cutoffs
Overall score is presented on a simple visual “severity” scale
Includes questions phrased as self-observation (I feel . . .) and other observation (People tell me . . .)

Cons

Not clinically tested or validated
Unclear how cutoffs were derived
Includes questions on topics that are not a part of generally accepted alexithymia definition