Yearly Archives: 2013

Diagnosis

I Think I Might Be Autistic. Now What?

56 Comments

Take-a-Test Tuesday has led to some readers realizing that they too might be on the autism spectrum. Their comments nudged me to start writing about a subject I’ve been meaning to tackle: my Asperger’s “origin story” or how I came to realize that I might be autistic and what happened in the wake of that realization.

As usual, I’m mixing personal narrative with a bit of advice based on what I learned from my experience. I hope that other Autistics and those who think they might be on the spectrum will add to what I have to say here by sharing their own experiences in the comments.

—–

So, you think you might be an aspie or autistic or somewhere on the autism spectrum. Now what?

First, take a deep breath. Relax. Nothing’s changed. You’re the same person you were before you took that test, read that article or had a lightbulb go off while talking to someone about autism.

I remember my first inklings that I might be an aspie. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. His first hint that he had Asperger’s was an online quiz that his wife asked him to take because she recognized so many aspie traits in him.

As they described the quiz questions, for the first time I realized that Asperger’s Syndrome is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. Down the list I went, nodding and thinking yes, yes, yes, ohmygoshyes.

I went in search of the Aspie Quiz and what really blew me away were the specific behavioral questions: Have you been accused of staring? Yes! Do you tend to talk too loudly or too softly? Yes! Do you have difficulty filtering out background noise? Yes!

How had I not seen this before?

now-what

I’d heard a similar interview with Finch back in 2009. Interesting, I’d thought at the time, but nothing more. I’d read quite a bit about autism, because I was drawn to the subject. It never occurred to me to ask why. I’d taken the Autism Spectrum Quotient AQ test several times in the past. Every single time I scored above the cutoff for being on the spectrum. Every single time I told myself that it was probably a fluke, or even more improbably, that most people likely scored that high.

For years I’d tiptoed around the subject of autism. Finally, at 42, I was ready to explore the possibility that I was autistic.
Processing your First Contact with Asperger’s or Autism

  • Nothing has changed; everything has changed.
  • Know that no matter how it feels right now, this can be a positive realization.
  • If you’re on the spectrum, learning more about what that means can help you understand yourself better and learn to cope more effectively with the challenges that an Autism Spectrum Disorder (ASD) presents.

Next Part in the Series: Paths to Realization and Is this Me?

Acceptance

What is Neurotypical?

189 Comments

How many books on Asperger’s Syndrome or Autism have you read that begin with Chapter 1: What is Asperger’s Syndrome or Chapter 1: What is Autism? If you or someone you love is on the spectrum, then the answer is probably “a lot.”

The authors’ desire to start at the beginning is commendable but honestly I skip over these introductory chapters. I have the DSM diagnostic criteria memorized and I’m on intimate terms with the signs and symptoms of Asperger’s Syndrome.

Perhaps a more useful opening chapter for aspies would be: What is Neurotypical?

Neurotypical is a term that’s thrown around in the autism community like everyone instinctively knows what it means. If this is a new word for you (like it was for me not so long ago), in the ASD community, neurotypical is often used to refer to people who are not on the autism spectrum. It’s a mash-up of the words “neurologically typical” and is often shortened to NT.

A more correct word for someone who is not autistic is allistic. Technically, you can be non-neurotypical (neuroatypical) even if you aren’t autistic. Having clarified that up front, I’m going to go with the popular usage here.

How Can You Tell if Someone is Neurotypical?

So who are these NTs and how can you tell if someone in your family is neurotypical?

For starters, NTs make up about 99% of the population, so they’re everywhere. It’s very likely that you know neurotypicals and you probably have at least one NT in your family. While there is no widely accepted diagnostic test, NTs are fairly easy to spot once you know what to look for.

Perhaps the most obvious giveaway is an NT’s tendency to make “small talk” or to want to “chat” with you. While small talk appears to be nonfunctional, for NTs it serves a very specific purpose. It’s a good idea to humor them and participate to whatever degree you can tolerate. If you’re patient with them, many NTs will soon feel comfortable enough to move from small talk to more interesting, in-depth conversations.

Another common sign that someone is an NT? Touching. NTs enjoy all sorts of physical contact and often use touch to greet friends, family and even casual acquaintances. While it’s hard to fathom why your real estate agent or hairdresser feels the need to send you off with a hug, try not to be judgmental while fending them off. NTs are simply wired differently.

Sometimes NT behavior can be frustrating. For example, you may notice that NTs have a tendency to say something other than what they mean. If you get a new haircut and you’re not sure how it looks on you, don’t bother asking an NT. Most will tell you it looks great, even if you look like this:

"No, really, I love your new hairstyle!"
“No, really, I love your new hairstyle!”

Why? Because when a neurotypical woman asks her friend “how do you like my new haircut?” she isn’t looking for her friend’s opinion, she’s looking for validation. When her friend says, “I love it” she may mean I love your hair, but what she’s really saying is I love you and value you as a person.

So when your NT friend says “how do you like my new haircut?” and you, being your aspie self, reply, “It’s a little short in the back but I like it”, your NT friend hears I secretly hate you and think you’re ugly.

Confusing, I know.

And good luck getting an opinion out of an NT when you really need one. It may help to preface your question by explicitly stating that you’re seeking an actual, honest-to-God opinion but, even then, the NT’s dogged adherence to socially appropriate behavior may inhibit their ability to say what they’re really thinking. Try to remember that NTs were born this way and their natural sensitivity to what others are thinking and feeling often makes it hard for them to be completely honest.

Of course all NTs are different, much like all aspies are different, so these are just some general guidelines for recognizing the NTs in your life.

Offended Yet?

If you’re neurotypical, how did reading this make you feel? Offended? Stereotyped? Did you enjoy the patronizing tone? How about the sweeping generalizations?

What if it went on to talk about how some NTs are so socially adept that they get promoted into positions they don’t have the knowledge or skills for? What if it listed good careers for NTs (sales, management, counseling) and authoritatively added that you shouldn’t bother considering engineering or computer science because you’ll probably fail if you do?

Perhaps you’d like to read that your neurotype–the way you were born–will cause significant stress to your family or prevent you from having meaningful relationships? How about some unsubstantiated data on the astronomically high divorce rate among people of your neurotype or the alleged rarity of someone like you ever becoming a parent, let alone a good one?

Yes, We Can Read

My search for books about Asperger’s syndrome has left me surprised at how much there is about Asperger’s that isn’t directed at people who have Asperger’s. The majority of the books that I’ve read are addressed to parents, educators, caregivers and counselors. Which is great. There need to be resources for all of these people.

But there also need to be more good comprehensive materials that are written for aspies, not just about us. We can read. We’re eager to learn more about how our brains work. Why is it so hard to find authors who recognize that?

—–

More on neurotyipcals:

Asperger's Tests

Taking the AQ-10

75 Comments

A few weeks ago I took the Autism Spectrum Quotient (AQ) test. In the comments on that post, Nat who you can find on Twitter at @quarridors, mentioned that there is shorter version–the AQ-10. This week for Take-a-Test Tuesday, I took the AQ-10. If you’ve taken both the AQ and the AQ-10, check out my note at the bottom of this post.

The AQ-10 is a condensed (10 question) version of the AQ test. It’s relatively new, and was developed based on a 2011 study involving 1000 people with ASD and 3000 neurotypical controls.

Though the AQ-10 is much shorter than the AQ, according to the 2011 study, it has a similar predictive power. There are some concerns about the AQ-10 study–like the original AQ study, it consisted almost entirely of adults with Asperger’s Syndrome, making it hard to generalize the usefulness of the AQ or AQ-10 for autistic adults who aren’t aspies. There is also a gender disparity in the groups, with about 60% of the control group members being female and about 54% of the ASD group members being male.

The AQ-10 is used as a screening tool for adults in the UK, to identify people who may benefit from receiving a comprehensive autism assessment. The developers of the AQ-10 have emphasized the greater practicality of a 10-question screening test, which can easily be completed as part of typically brief primary care doctor visits.

Like the AQ, the questions on the AQ-10 are drawn equally (2 questions each) from five domains:

  • attention to detail
  • attention switching
  • communication
  • imagination
  • social

It’s interesting to note that the 10 questions with the best predictive value on the short versions of the AQ for adults, adolescents and children were all the same except for one. The developers of the test point to this as evidence that autistic traits are relatively stable across a person’s lifespan. Think about that for a moment.

Pros and Cons of the AQ-10

Pros:

  • Very brief (10 questions)
  • Clinically tested
  • Has similar predictive properties as the 50-item AQ
  • Adult and child versions are available

Cons:

  • Requires manual scoring
  • Limited number and type of questions
  • Lack of subscale scores

Taking the Test

You have to take this one the old-fashioned way, with a pencil and paper. You can find the test in PDF format here but for ease of use (and because there is no automated scoring version available online), I’m going to include the 10 questions in this post as well.

For each of the questions below, choose one of these answers: definitely agree, slightly agree, slightly disagree, definitely disagree:

1. I often notice small sounds when others do not.

2. I usually concentrate more on the whole picture, rather than the small details.

3. I find it easy to do more than one thing at once.

4. If there is an interruption, I can switch back to what I was doing very quickly.

5. I find it easy to ‘read between the lines’ when someone is talking to me.

6. I know how to tell if someone listening to me is getting bored.

7. When I’m reading a story I find it difficult to work out the characters’ intentions.

8. I like to collect information about categories of things (e.g. types of car, types of bird, types of train, types of plant, etc).

9. I find it easy to work out what someone is thinking or feeling just by looking at their face.

10. I find it difficult to work out people’s intentions.

Don’t worry too much about the definitely or slightly designations. Scoring is based on whether you agree or disagree, not on how strongly you feel.

Scoring the Test

Use the following to score your answers (“definitely” or “slightly” get the same score so just focus on whether you agreed or disagreed for scoring purposes):

Question 1: agree=1 point, disagree=0 points
Question 2: agree=0 points, disagree=1 point
Question 3: agree=0, disagree=1
Question 4: agree=0, disagree=1
Question 5:agree=0, disagree=1
Question 6: agree=0, disagree=1
Question 7: agree=1, disagree=0
Question 8: agree=1, disagree=0
Question 9: agree=0, disagree=1
Question 10: agree=1, disagree=0

Phew! Okay, now you should have a number between 0 and 10. The cutoff score is 6. If you score 6 or higher, the doctor in the UK who administered this would then consider recommending you for a full autism evaluation.

One of the things I see over and over in the literature about the AQ is that patients should be referred for an evaluation if they score above the cutoff and are suffering some distress. So if you score above the cutoff and are not distressed by your symptoms, I guess you can go on your merry way.

I scored an 8 (which is very much in line with my 41/50 on the AQ).

The Bottom Line

This is a relatively new, self-report screening instrument.

If you took both the AQ and AQ-10 did you find that your scores were similar?* Did you score significantly higher (or lower) on one than the other? Did anyone score above the cutoff of 6 on the AQ-10 but below the cutoff of 32 on the AQ?

*A quick way to compare your scores is to convert them to a percentage. For example, I got 41/50 on the AQ, which is 82% (41 divided by 50 = .82). I got 8/10 on the AQ-10, which is 80%.

Acceptance

The Importance of the Pasta on the Left

50 Comments

I was in the cereal aisle in Target, waiting for The Scientist to decide on his cereal purchase, when I overheard this exchange between a mother and her preteen son:

Mother: “James, come and let’s pick out some cereal.”

James (appears from around the corner): “But I haven’t finished looking at all the pasta. I looked at the pasta on the right but I didn’t look at the pasta on the left.”

Mother: “We need to pick out your cereal.”

James (sounding panicked, voice rapidly rising into hysteria): “But I need to look at all the pasta! I haven’t looked at the pasta on the left. I need–“

Mother: “Okay, you can finish looking at the pasta if you promise to come right back here when you’re done and pick out your cereal.”

James: “I promise.” (dashes off around the corner then returns a minute later)

Mother: “Are you done?”

James: (looking happy) “Uh-huh.”

If you’re autistic or you have an autistic child, I bet you know why this conversation made me smile.

James’s mother didn’t say, “You don’t need to look at all the pasta.”

She didn’t say, “That’s ridiculous.”

Or, “You can look at the pasta later (or next time).”

Or, “Stop whining or we’re leaving.”

Or, “Grow up and act your age.” (James was around 10 or 11, I think.)

Or, “Get over here and pick out a box of cereal or I’m taking away your video games for the rest of the day.”

The pasta aisle is a thing of beauty, with it's boxes and bags all lined up by color and size.
The pasta aisle is a thing of beauty, with its boxes and bags all lined up by color and size.

Though she may not understand why James needs to look at all of the pasta when he visits Target, she recognized that preventing him from doing it would result in a meltdown in aisle 13.

And look at the results: The situation was rapidly de-escalated. James was happy. He came back and picked out his cereal as promised, without any prompting. His mother had to wait for him, but an extra minute standing in the cereal aisle beats the hell out of trying to calm a kid having a meltdown in the cereal aisle.

Meet Us Where We Are

There is a lot of talk about how autistic kids (and adults) need to learn flexibility. We’re too rigid, have too many nonfunctional routines. There are elaborate systems for teaching flexible thinking (which is important, I get that). But maybe non-autistic people need to be more flexible, too.

For kids like James, Target is stressful. The noise, the lights, the people, the smells–any or all of these can be overwhelming to autistic individuals. (And yes, based on what I saw I’m assuming–perhaps wrongly, but I doubt it–that he’s on the spectrum.)

If looking at the pasta makes a kid feel better, is that a big deal?

For some parents it might be. Let’s face it–a kid who needs to not only look at the pasta, but to be sure he’s looked at all of it? A little weird. But so what? We all have our coping mechanisms and James has found a way to cope with the stress of Target.

And his mother, bless her, she seemed to get this. She doesn’t look concerned about people judging her for letting her son “have his way.” She doesn’t belittle or shame him for what is, in his mind, a very real need. She doesn’t complain that he’s wasting their time or being uncooperative.

Her response left me wondering how long it took them to get to this point. Because not only did James interrupt his study of the pasta aisle to come when she called him, he returned the second time and picked out his cereal without being prompted. For a kid with such an intense need to study the pasta aisle, this is huge. Huge.

In this one small exchange, he’s learning how to negotiate, how to compromise, how to satisfy his needs while being conscious of his responsibilities, how to keep a promise, how to regulate anxiety and/or sensory overload using coping mechanisms.

Yes, autistics can be rigid. Yes, we have some odd routines or habits. Sometimes this has to be addressed. If James needed to spend an hour studying the pasta aisle, then yeah, big problem.

But a few minutes in the pasta aisle, accepting that the pasta on the left is important, even critical, to this particular kid–that doesn’t have to be a problem at all.

When you have an autistic family member or friend, you’re going to run into situations that you find hard to understand. There will be times when we’re not where you think we should be or where you wish we were.

When this happens, try practicing a little flexibility. Meet us where we are. You might be surprised at the results.

Aspie Traits

The High Cost of Self-Censoring (or why stimming is a good thing)

104 Comments

As an adult aspie, I often feel that I need to self-censor in social situations. Don’t say the wrong thing. Don’t stare at people. (But don’t forget to make eye contact!) Don’t laugh at the wrong time. Don’t speak too loudly or too softly or too often or too infrequently. And above all, don’t stim.

Stimming makes people nervous. As a kid, I stimmed like mad. I’ve been rewatching old home movies and there I am stimming my way through Santa’s Land and Disney World and every birthday party ever. I’m bouncing, rocking, twitching, flapping, hopping. I’m hammering with anything that remotely resembles a hammer and rubbing my fingers over every nearby surface. I’m constantly in motion.

Four decades later, my stimming is more discreet. You’d have to be watching closely to notice that I’m rubbing my thumbs over the spacebar on my keyboard when I stop typing. Or that I’m fidgeting with a bottle cap under the table at a restaurant or playing with my hair while driving or folding and unfolding a piece of paper while I wait in the bank.

Stimming is so much a part of who I am that I when first read about autistic traits, I completely denied that I have stims.

That little kid in the home movies grew into a teenager who learned to stim more subtly to avoid drawing attention to herself. I’ve found socially acceptable stims like doodling or manipulating objects (pen, stress ball, cell phone) with my hands. I’ve tucked away my more obvious stims for use in private.

Well, mostly. The day of my Asperger’s assessment, I started out stimming discreetly during the interview with the psychologist. By the time I hit the three-hour mark in testing, I found myself rocking back and forth as I tried to work out the spatial reasoning puzzles.

Happy stimming feels a lot like this
Happy stimming feels a lot like this

There is too much comfort in stimming–it’s too much of a biological imperative–for me to completely extinguish it.

I recently read that medicating a child to reduce stimming is a good way to help the child concentrate on school work. Yes, if the behaviors are self-harming or severely disruptive medication might be the answer (though if it were my child, redirecting toward a less harmful stim would be my first strategy).

But for kids who are rockers or fidgeters? I have a feeling that the medication does more to make the people around them feel better.

If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?

Stereotyped Movement (Stereotypies)

Stimming is the most common term used to describe the repetitive movements characteristic of autism, but a more formal term (and the one used in the DSM diagnostic criteria) is stereotyped movement or stereotypies. In this case, “stereotyped” has a different meaning than the one we’re used to. In a behavioral science capacity, stereotyped movement refers to repetitive, nonfunctional movement.

Like so much of what the experts term nonfunctional about autistic behavior, I’d ask nonfunctional for whom?

A Little Insight from our Primate Cousins

Trying to understand what stereotypic movement is and why it happens led me to reading about stereotypic behavior in captive animals. In an issue of “Laboratory Primate Newsletter” (Volume 23, No 4, October 2004) I found a surprising answer.

The researchers concluded that stereotypic behaviors in captive animals aren’t truly abnormal; they’re a reaction to abnormal environmental conditions. In other words, monkeys should spend their days swinging from trees and running about in the jungle, not sitting in small cages. When the monkeys can’t indulge their natural behavioral tendencies, they resort to stereotypical movements like “pacing back and forth, running in circles, somersaulting, rocking, self-biting, earpulling, hair-pulling, eye-poking, etc.”

Sound familiar?

The article goes on to say:

“Many stereotypies are signs of frustration, with the subject being chronically thwarted from expressing basic activities (Reinhardt).”

Yes, stereotypies are related to frustration at being chronically thwarted from expressing basic activities.

Think about all of the things that feel like basic needs to an aspie. Being immersed in a special interest for long periods of time. Being alone. Sticking to routines. Avoiding excessive noise, strong smells, or crowds. How often do we feel thwarted when trying to pursue the things we find comforting? Chronically seems like a pretty good description to me.

When you look at it from the perspective of the animal researchers, aspies are engaging in stimming (stereotypies) not because we’re abnormal but because we’re constantly at odds with our environment.

While it’s impossible for the majority of us to indulge our aspie tendencies 24/7, it’s important to recognize the cost of self-censoring. When I’m happy, the urge to bounce up and down is nearly irrepressible. I’ve learned that it’s okay to bounce when I’m with my family. In fact, my husband’s reaction to my unbridled, childlike joy is often a huge smile. It makes him happy to see me happy, even if my way of showing it is more appropriate to a four-year-old than a forty-three-year-old.

Self-censoring is exhausting. Letting my aspie side rule feels liberating. Why would I want to extinguish that?