The Seven Stages of Asperger’s Awareness: Background

Stage-Based Background:

Many psychological developments progress through a sequence of experiences. Elizabeth Kübler-Ross described the five stages of grief as denial, anger, bargaining, depression, and acceptance. Others have added stages such as renewal and hope. Understanding the process has helped many of us deal with grief and grieving. C.S. Lewis, in his book A Grief Observed, gave us the gift of a description of grief through the experience and expression of a gifted writer. Sometimes, we can learn vicariously through the experiences of others. That learning can be a comfort and a source of sanity in the midst of chaotic times.

Unlike stage theories, many personality theories (DISC, Myers-Briggs/Kiersey, LIFO) propose that our working personality has a number of dimensions. The number four seems to be common, though there are other configurations. The Johari Window, while not exactly a personality theory, is a way of visualizing the interaction of various aspects of our identity. I have found the Johari window a helpful way of explaining the value of learning, reflection, disclosure, and feedback.

Johari Background:

Here’s a basic look at the Johari Window. (The window is named for its creators, Joseph Luft and Harrington Ingham).

The two dimensions of knowledge intersect to form four quadrants. Quadrant one is variously called the Public, Arena, or Open quadrant. The public arena contains everything about our self that is known to us and known or at least accessible to others. This might include our gender, height, name, and anything else we choose to reveal. Quadrant two is the blind spot containing things about ourselves that are known to others, but unknown to us. I often use bad breath and the way our colleagues regard us as examples from quadrant two. Quadrant three is the unknown, mystery, and it contains things about you that are both true and unknown. The presence of early stage cancer or the capacity for athletic accomplishment are both legitimate examples of information from the unknown quadrant. Often, the revelation and reassignment of unknown information is challenging and traumatic. The final quadrant is the hidden, avoided, or façade dimension. This contains everything we know about ourselves but have not disclosed.

In addition to the major principles of the Johari window that are explained elsewhere, I observe four important dynamics.

1. The choice to disclose personal information increases the public quadrant at the expense of the hidden quadrant.

2. Feedback from others increases the public quadrant at the expense of the blind quadrant.

3. Our window looks different in different settings. The shape of our window with a spouse would has a smaller hidden domain than with our children. That with our family should be shaped differently from our professional or public profile.

4. In the age of Facebook, and other broadcasting social media, impulsive self-disclosure is riskier than ever before.

Application:

Both stage-based wisdom and personality theories are helpful ways to understand the experience of Asperger’s Syndrome. Most of us start in ignorance and end up somewhere along the path toward acceptance. Some veer into self-hatred, while others become so pro-Asperger’s they end up becoming hostile to those in the neuro-typical population.

This series is a way to think about the progress of discovering Asperger’s. I am sure that my insights generalize and oversimplify from my experience as a person with AS, a father of an Aspie, and a principal to many more. So I’ll cede the technical and scholarly ground and speak more simply about how I’ve seen many people experience this process. If you find yourself anywhere in the descriptions, I’d like to hear from you so I can correct and refine the model.

In the next few posts, I will develop a model of Asperger's Awareness that may be helpful to Aspies, their parents, and those who serve them in schools and other settings. Thanks for adding your insights as we go. I suggest that this model is a gentle way to help bring Aspies and those who love them into greater understanding. I trust it will be useful to some of you.

________________________

More insights from the Asperger's Expert are on the main page.

The Seven Stages of Asperger's Syndrome: Preview

Like most who have Asperger's Syndrome, I am experiencing AS as an unfolding reality. I am starting a series about how we recognize and come to terms with the syndrome when we or someone we love discovers Asperger's.

I have given the seven stages some cryptic names. Maybe you can infer why I chose each name?

Stage One: Bliss
Stage Two: Inkling
Stage Three: Desperation
Stage Four: Dawn
Stage Five: Darkness
Stage Six: Acceptance
Stage Seven: Celebration

I'll start with some background information on stage-based processes and the Johari Window before diving in to the stages themselves. Check back for more info through January.

_________________________
More insights from the Asperger's Expert are on the main page.

Asperger's New Year's Resolutions: Part Two

5: I resolve to give myself a break when I utterly fail to follow through on my commitments. I have some distractibility and am most excited by “the new thing.” That’s part of my personality type as a visionary/innovator. I can modify it or try to moderate it, but I resolve not to wallow in it.

4: I resolve not to spend more than one hour in a funk when I don’t get my way. I tend to pout about disappointments—and I’m sure pouting doesn’t make me a better person.

3: I resolve to start more of my days connecting with God, His word, my faith, righteousness, trying to be Christlike, and trying to bear the image faithfully. I don’t think having Asperger’s give me a pass on walking in truth. I resolve to live like I believe.

2: I resolve not to take people for granted. I love my wife. I treasure my kids. I look forward to celebrating 21 years next week at our favorite restaurant. As the little ones grow up and become my adult kids, I regret time not spent and wish for some more. I have some more with my kids still at home, so I resolve not to waste it.

1: I resolve to do the next right thing. 2009 was a lousy year. All the important things ended great, but there were so many valleys along the way. We had multiple cancer scares, two major surgeries, upheaval at work and challenges at school. Plus, a third child graduated and launched into the world. There were many days when the long view was so cloudy I had to retreat to the front of my nose and just do the next right thing. I want to remember those many lessons and keep doing one right thing in a row. Some year I’ll graduate to at least two right things in a row, but for 2010 a modest resolution, well kept, is sufficient.

Happy New Year! May your 2010 be blessed and may you be a blessing to all.

____________________

More insights from the Asperger's Expert are on the main page.

10 Asperger’s Resolutions for 2010: Part 1

10: I resolve not to freak out over the probable elimination of the term “Asperger’s Syndrome” from the DSM V. I am not Asperger’s and Asperger’s is not me. I can still be who I am with some other label.

9: I resolve to practice a new social courtesy every day for the month of January. I will greet, make eye contact, thank, indulge, ask after, tolerate, those I live and work with.

8: I resolve not to excuse my crusty behavior as an expression of AS. I control what I do, even if I can’t always control who I am.

7: I resolve to enjoy my trains. Training with my son is a pleasurable and appropriate distraction. I won’t regret the time we spend together.

6: I resolve not to resent people who are acting in their own interests. I act in my own interests all the time, so fair’s fair. If it is in someone’s interests to disagree with me, refuse me permission, correct me, etc. it isn’t necessarily personal. I resolve to get and maintain a grip.

_________________________
More insights from the Asperger's Expert are on the main page.

Not As Cold As You Think

People who have Asperger’s are often very pragmatic about social relations.

For example, I am instinctively less social than I “should” be to workers and people I meet on a temporary basis. My wife is very good about saying hello, and wishing a good day to workers in tollways and paid parking lots. I have learned from her that it is polite and well-received to add a simple “I hope your day is going well.” (I learn a lot from my wife.)

_________________________________________________________________

As a pragmatist, it makes no logical sense to be solicitous toward people with whom you will have no further contact. Unless you believe in Karma or the three-fold rule, you won’t get any benefit out of the exchange.

In a world where people are reflexively polite and responsive, a person who does not engage in small talk or social niceties seems cold and unfeeling. It may be that that person is simply efficient. If you are or love someone with Asperger’s, perhaps it is worth thinking through this simple truth:

Every opportunity to be polite/social is an opportunity to practice the social skills that may someday be critical to success. The payoff may not be obvious or immediate, but it is worth it to take advantage of every learning opportunity.

_________________________
More insights from the Asperger's Expert are on the main page.

Ghandi on a Fishing Boat

Back in high school and college, a series of teachers “introduced” me to Maslow’s hierarchy of psychological needs. The model was very popular in the 80’s, for good reason. The basic logic makes sense, since it is hard to pay attention to membership and belonging needs if you are hungry, homeless, and under assault. (Sorry for the gross oversimplification Abraham.)

However, I always wanted to argue about the claim that the highest level, self-actualization, was so rare and difficult to accomplish that only a few people in history had ever attained it. Commonly, teachers and texts would suggest that only Jesus, Ghandi, and Martin Luther King Jr. were self-actualized individuals.
_______________________________________________________________

I disagree. I think self-actualization is a state, not a level. I slip in and out of Maslow’s levels depending on the context. During a board meeting, if I get hungry I stop caring about whether the board likes me, and I wonder if I can snag some of their spare Chik-fil-a sandwiches. When I am full, rested, and secure, I often skip past the social levels of Abe’s pyramid and jump right to actualizing myself. It’s definitely a human thing and his may be an Asperger’s thing, but I’m not sure.

Here’s an example of a self-actualized epiphany (SEA). When I was 20, my brother died at sea and I inherited his set-net commercial fishing license, boat and gear. (Set-netting is a small-scale fishing method using open skiffs and small crews) That summer, I was a rookie captain with Meric Overman as my main crew and partner. During an opening in July, we decided to take a risk and set our nets at a distant location called Riley’s Wreck (Note to prospective captains—avoid being in places named for past shipwrecks.) Riley’s Wreck is along an exposed section of coastline that faces out across the Bering Strait to Siberia. To get there, Meric and I left Kotzebue and drove south around Cape Blossom.

From the time we passed the airport beacon, Meric and I were on our own with nothing to block the swells rolling across from a Siberian storm. It was intense, cold, and scary. As captain, I had the wheel of a 22-foot open skiff, driving twin outboards into the storm. I had reason to be scared. For one, my mom had lost her only other son just 5 months before—in a storm—at sea. Death and drowning was not abstract to me, and I was churning with my own grief and fear. For another, the waves were big, intense, and growing. But the best fishing was through the storm, around the cape, and down the coast. Mostly though, I was afraid because I was inexperienced, undersized, and completely in control. The waves were nasty, the wind was ripping, the summer sky was starting to dim as it does in late July in the arctic. Our little boat was outmatched, and our little crew was insignificant. And then it happened. Ghandi arrived.

Somewhere just North of Cape Blossom, we synced up with the storm. I started powering down the waves and easing off on the crest. We stopped jumping and pounding and started gliding. Working the throttle and the relaxing on the wheel, we started surfing the swells instead of powering through them. Meric felt it too. He stood with me and we knew without speaking that we could make it through. The next 30 minutes were the most pure expression of capability that I have ever felt. In the midst of real danger and adversity, we were up to the challenge. It was something like the “flow” that Csikszentmihalyi has described throughout his career.

We made it through and set our nets for a modest payday. I remember building a fire on the beach to dry out our gear, then spending a cold night in the storm until fishing the next day. I don’t know how many salmon we caught, or how much we made. What I do treasure is the memory that on that night, in that storm, I had what it takes. That is a touchstone that matters in a world that burdens Aspies with a sense of their abnormality and insufficiency.

I am posting this here at AspergersExpert because I appeal to all of us who are or love an Aspie to adopt a new concept of self-actualization. The tendency of spectrum dwellers to immerse in a challenge and focus intensely on an experience is not anti-social—as we are often told. Instead, it is an experience of self-actualization that is memorable and motivating. Once there, we want to go back. If you get there once, figure out the conditions and go back often. Find what you love and do a lot more of it.

For me, fishing commercially was a season of life that has ended. I haven’t set a net in 20 years. That doesn’t matter now. What matters is the memory and the recognition that I can go back to that metaphorical place when I need to.
A few years ago, I read a book by John Eldredge (Wild at Heart) that contained a quote by Howard Thurman.

"Don't ask yourself what the world needs; ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who have come alive."

If you have Asperger’s, don’t ask what makes you more like the world—more “normal.” Ask what takes you to your place of greatest self-actualization. Once you have that answer, do a lot more of that—because our world needs you.

Our. World. Needs. You.


_________________________
More insights on the main page.

The Asperger's Express: Why Aspies Love Model Trains

I’ve noticed that one of the most common search strings that leads to this blog is Asperger’s and model trains. Since I’ve learned a little bit about this topic, I thought I’d share my observations about the connection.

In the Asperger’s universe, model trains have advantages over life. As I have written elsewhere, the proportion of people with Aspergers in the general population is eclipsed by the number of my fellow aspies to be found in a model train store on a Sunday afternoon. Why is that?

_________________________________________________________________

Model trains are much more than little machines. They are the centerpiece of a microworld where the engineer engineers the entire creation. In a lot of ways, the owner of a model train layout is a lot like the protagonist in a 1941 science fiction story by Theodore Sturgeon called Microcosmic God about an iconoclast who creates and controls a new species. If you love someone or are someone with Asperger’s, I highly recommend you read the text or a scanned version. Sturgeon didn’t know about Asperger’s because the label didn’t exist in 1941—but he knew enough about they syndrome to paint an accurate picture.

The world of a train modeler (often called a layout) has many advantages over the real world.

Real life is unpredictable, but a layout is highly predictable. If you want them too, the trains can literally run on time. The weather never interferes; and virtually all problems can be solved. The train set is mercilessly, relentlessly rational.

Real life is filled with humans, human emotions, human idioms, human impulses and human ambiguity. The train layout is also filled with humans, but they are plastic and permanent. If a scale-size worker is standing next to a depot, he’ll be standing there again tomorrow—he’s glued to the layout! This kind of routine predictability is comforting and calming to a person for whom the word is constantly disquieting and stressful.

Where human interactions are complex and inscrutable, trains and train operations are complex and completely knowable. Those who model trains can specialize in locomotives (which they like to call “motive power”). They can be expert landscapers, historians, or archeologists. At their most creative, train modelers are artists in four dimensions. They bring the entire physical world to life by operating the train on a scale approximation of an actual train line operation.

For an adult with Asperger’s, playing with trains is not play. Trains satisfy the need to think deeply and drill down to minute details, but model trains are mostly free from the challenges of anticipating and adapting to the social environment. To see a room full of train enthusiasts is to see an environment where a person with Asperger’s can shine. The emphasis on technical knowledge paired with genuine enthusiasm for arcane details is genuinely exciting. The de-emphasis on social sophistication and divergent conversation creates a safer place.

I’m sure there are many people with Asperger’s who don’t care for model trains. I’m certain many model train enthusiasts have no trace of Asperger’s. But where the two domains overlap, you will find a world where people with AS can relax into themselves and experience joy without anxiety. For someone with Asperger’s, that can be a gratifying way to spend time.

The Aspies you love might not be into trains, but I'll bet they're into something. Maybe they need to spend time in another world because the normal world wears them out.

Escaping the Monversation: Three ways to Redirect Obsessive Aspie Discourse

Have you ever found yourself halfway attending to a conversation with your Aspie child/spouse/friend when suddenly you realized that your “uh-huh’s” and distracted nods have committed you to a one-sided stream of consciousness monversation (my term for a monopolized, monotopic, monologue) about trains/pokemon/zoology/dinosaurs/natural disasters or some other fascination of the moment? What can you do?
_________________________________________________________________

First, it helps to understand a bit about our psychology. While we don’t discount the importance and pleasure of social dialogue; we with AS tend to find great satisfaction/pleasure/comfort in the recitation/repetition of stylized facts and information. They are a safe conversational “place” for us, free from the vagaries and unpredictability of typical human conversation. We don’t intend to be disrespectful, but we do—at least subconsciously—act to protect/preserve our own interests. Therefore, transitioning us out of our singular topic is slightly risky and is best attempted with explicit clarity.
Here are three ways to escape the monservation:

1. PREMPT the monversation by helping your aspie child/student analyze a typical conversation. Analyze means to “break down into its constituent parts” so, this exercise is designed to calibrate your Aspie’s sense of what normal conversational interchange look like. As with many cognitive approaches to Asperger’s symptoms, the point of this exercise is to make explicit the intuitive or implicit social rules that most humans learn without direct instruction. How is works: choose a sample of conversation with two partners (work up to three or four as the person with AS can handle it.)
Have the child track the conversation for turn-taking, making a tally mark each time the conversation switches speakers.
Have the child track “echoing” which is a technique we use to synchronize our response with the speaker. This involved repeating or rephrasing a concept or term offered by the other conversant in such a way to amplify, extend, or affirm the original speaker’s idea.
Have the child track non-verbal agreement and attention indicators such as eye contact, “uh-hum’s” postural changes, nods.
Have the child diagram the “conversation train” showing how topics shift over time and trying to see when the conversation jumps the track. For many of us with AS, it is hard to understand how a conversation about the weather can end up in a political debate. (Strangely though, we can turn almost any topic onto our obsessive cul-de-sac.)
If possible, videotape a conversation with your child/student and have them analyze then compare. As much as possible, have the child treat the typical conversation as a template.

2. DISRUPT the monversation by using specific coded cues that only you and the child understand. I like to use proper nouns, such as the speaker’s name. If the child is conversing appropriately, then I use pronouns such as you, he, or we. For example, I might point agree with a statement saying, “We had a similar experience.” But if the child with AS is monopolizing the conversation I might say, “David, do you know if Mr. Jacobsen has ________________________?” This disrupts (hopefully) the monversation by reintroducing the other partner, and by inviting the other conversant to lead for a bit. You could also use colors, numbers, etc. depending on the standard obsession. I like to use the names of people as a way to get my child’s attention and redirect it back to the other person.

3. CONCLUDE the monversation explicitly by setting an end point. I like to choose a set number of facts or stories, such as: “David, you may tell me two more facts about Pokémon and then we are going to have a two-way conversation about some other topics.” Alternatively, for an adult with whom the previous approach would seem condescending, I would be more peer-oriented and say, “John, your interest in hurricanes is more extensive than mine. I would like to change the subject and talk about several other topics as well. While this might seem intrusive and impolite to most people, we Aspies tend to prefer direct conversational direction versus hints and indirect overtures. Key phrases like “change the subject” or “talk about something else” are hard to miss. Even someone with AS will learn your conversational preferences. Asking guided questions is rarely effective at dislodging an Aspie from their preferred conversational track—it is simply too subtle. Making a request or even a polite direction is much more likely to work.

Happy redirecting!


_________________________

Asserting for an Excellent IEP: Seven Non-Threatening Questions

Parents, as you prepare to go back to school, you may participate in IEP or other meetings to build support for your child in the new school year. Since IEP and other meetings can degrade into adversarial contests, here are some questions you can ask to assertively clarify your expectations right from the start.

1. What has worked well for other students with Asperger’s at this school?

_________________________________________________________________

2. What strategies can we put in place to help teachers and my child de-escalate conflict?

3. What kinds of self-calming behaviors or objects will you support?

4. My child needs a “safe person” to go to in times of stress. Who can fill that role?

5. My child is especially interested in ________________. How can you leverage that interest for academic success?

6. What plans do you have to protect my child from social trauma during unstructured time such as bus rides, lunch time and recess?

7. What information or access can I provide to help you support my child?

Seven Taboo Words for Spectrum Citizens

There are seven words that I see and hear used about people on the spectrum.
Each of them has enough truth to be tempting, and enough pain to be traumatic.
The first word is "ODD".

"Odd" has all sorts of connotations and overlays that separate Aspies from the rest of the population. It implies a standard of normal, and sets the spectrum-dweller apart from that standard.

The next word is one some Aspies use to describe themselves—they shouldn't...
________________________________________________________________

"FREAK" shows up in the title of at least one Asperger's book. This is one of the strongest pejoratives used about people with Asperger's.

Confessions of an Inconsistent Aspie

I have a quick thought about why people have trouble not misunderstanding Aspies. (I know there’s an implied double negative there, but bear with me.)

Two of the characteristics that lubricate social interaction are predictability and reproducibility. We create an interpersonal dance of action and response based on how we behaved last time and the time before. Like literal dancers, some of us are better at anticipating and improvising with our partner. Some of us are not.

I worked for a principal who was egotistical, imperious, image-conscious, and a workhorse. Most of us who worked for him found him cool and impersonal, but consistent. If you worked for this man, you always knew exactly where you stood, what he thought of you, and what your boundaries were. He wasn't particularly likable, but he was easy to work with.

I also worked for a superintendent, who was most effective at building emotional connections among the egos and quirks of district leaders. She could curse like a sailor to get a construction foreman moving, but she could also get on the floor with a nervous first-grader, dropping her voice and shrinking her body to facilitate interaction. She wasn’t inconsistent—she was consistently adaptive to the people around her.

This brings me to myself and other Aspies. We seem capable of high levels of observation, sensitivity, and cognitive awareness—but not always. We see details in the environment or in our friends that other miss, so we can be excellent observers. But we don’t always act on those observations with sensitivity or compassion. We feel, but we don’t always seem to feel for (compassion) or feel with (empathy).

In my limited experience, I am at my best when I observe correctly, adjust my affective stance accordingly, and provide an appropriate response to the other person(s). The problem is that this takes a lot of energy and focus, and sets an expectation that the next time I might get it right again. If I do, kudos! If not—condemnation.

This isn't an apologetic for people with Asperger’s Syndrome. I am one, and people like me drive me a little batty.

A lot batty.

So if you are or love someone on the spectrum, please don’t misinterpret our inconsistency. We might not even see the pattern that offends or disappoint you. I know this is crazy-making, but it’s true. We are sometimes as mystified by our interpersonal successes as we are frustrated by our interpersonal failures. We don’t learn from our mistakes as well, because we don’t always understand them. The energy it takes to autopsy a social failure isn't always worth the effort.

Thank you for gently and graciously pointing out the deficient patterns in our interactions. We can learn. When you help us scaffold our emotional behaviors with cognitive awareness, we can do better than just avoid mistakes. That’s a negative worth undoubling.

More insights from the Asperger's Expert are on the main page.