Inkling: Stage Two of Asperger's Awareness

INKLING:

The path from ignorance to awareness is not well marked. There are few mileposts or road signs along the way and it can be hard to discern movement from one stage to another. Everyone exits the stage of blissful ignorance at a different place in a different way. A mother may have a blind spot about her child because she is accustomed to some idiosyncratic behaviors, while a father may see those behaviors and mirror or deny them. Sometimes it takes an outsider to encounter the behavior and immediately place it outside the range of typical.

In other cases, the intimacy of self or parent observation leads to early detection and recognition of Asperger’s symptoms, well before the syndrome is named and researched. As one parent commented on my Stage One post, “I had an awareness from birth…that something was up.” For a parent—often a mom—who is investing massive amounts of intimate time in her child, subtle symptoms like eye contact, muscle tone, distractibility, and even some aspect of how a baby rests (or doesn’t) in her arms can be an early indicator. Though they don’t all have Asperger’s, I have learned that my instinctive recognition that a child is getting sick is usually correct. There is some combination of breath odor, skin “feel” and a general subdued attitude that always precedes a heavy cold or flu. I’m sure there’s some more subtle and subconscious dynamic going on that allows some parents to sense Asperger’s well before any formal diagnostic criteria emerge.

At the other end of the spectrum are subjects who make it well into childhood, teen years, or adulthood without suspecting or raising suspicion of Asperger’s syndrome. Sometimes, the dynamics of adolescence are a powerful catalyst for bringing Asperger’s symptoms into focus. A child who seems normally quiet or withdrawn might be masking AS incompetence that comes to the surface during adolescent attempts at friend-making or romance. I remember clearly that during my fourth-year I had an epiphany about how people think about each other. I was convinced that my looks, my voice, my geekiness, my poor eyesight, etc. were the subject of constant recognition and criticism by all my classmates. One day I realized that I spent very little time observing and evaluating my peers, so it made sense that they spent very little time critiquing me. That realization was liberating (too much so, as I will share when I blog about Stage Five: Darkness). What other may have picked up on through intuition, I only accessed through cognition. The truth is, my self-consciousness was way out of proportion on the high side. Being an Aspergian extremist, I promptly swung my pendulum round to the other extreme.

By sixth grade, I knew I was something. When we were required to write Valentine’s Day cards to all the students in our class, I got some that were signed, “Not Really.” I knew I was intelligent and articulate. I could sing a bit and was tall enough to compensate for being slow and clumsy. I didn’t know why nobody liked me, but I knew it was true. I had an inkling of my Aspergian citizenship that persisted unresolved for 20 years.

Most people, especially in 2010, don’t take 20 years to transition from ignorance through inkling to dawn. There are so many resources and conversations about Asperger’s and Autism that someone is sure to vocalize a curiosity much more quickly. That vocalized curiosity, whether it comes from the subject, parents or someone else, is the beginning of the shift from ignorance toward awareness.

In the world of Johari window insights, inkling is when Asperger’s begins to move from the unknown pane into (usually) the blind spot. Although some teens and adults with Asperger’s may begin to suspect and self-diagnose, it is much more common for the first recognition to come from someone else. Since Asperger’s inhibits the aspects of self-awareness that include comparative social observations, the subject is less likely to observe the package of stereotypical behaviors and interests, social awkwardness, pedantic language that are external markers of Asperger’s. Thus, the movement through Johari is almost always from unknown to blind.

Once it is in the blind spot, Asperger’s is evident to someone. If that or those individuals are parents, the recognition raises concerns and lowers esteem. Without a clear answer, parents are left wondering, “What’s wrong/different/odd about my child?” Answers lag questions by months or years, and the intervening period is marked by decreased optimism and parent-esteem. Often, the subject picks up on the parent angst and misinterprets it as disapproval or disappointment. This is a pattern that re-manifests later on and can trigger a dark and dismal period.

Inkling is a relatively passive stage, but it leads through desperation before an explosion of learning, awareness, and recognition. Stay tuned for some stories about the desperation before dawn breaks.

In the meantime though, please retweet and/or add your comments below about how you first got an inkling that set you on the path towards Asperger’s Awareness. I’m glad to be there with you.

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

Bliss: The first stage of Asperger’s Awareness

BLISS

During the first stage of Asperger’s Awareness, nobody knows about the syndrome. Not only is the presence of the syndrome unknown, but neither the parents nor the subject may observe any symptoms. This blissful ignorance may be simply a factor of age. Until a child is 2-4 years old, the basic symptoms of Asperger’s are difficult to detect before the child’s language and cognitive development are sufficiently established.

As an example, a toddler Aspie may not have sufficient social interaction to reveal the impairments that emerge in childhood. While some of the early indicators of Asperger’s may be unusually advanced vocabulary or hyperlexia, with an infant or toddler, those symptoms are still below the threshold of detection.

Blissful ignorance can also be a function of denial, mild symptoms, or sophisticated coping skills. A family with an Aspie member might engage in various levels of denial, either celebrating his intellectual/verbal skills or ability to interact comfortably with adults. Ignoring the challenges of Asperger’s while emphasizing its gifts can be a conspiracy within the family system that keeps the status quo in place. Denial takes a lot of energy, and the energy required to stay in ignorance is rarely sustainable.

In stage one, Bliss, the presence of Asperger’s Syndrome is located in the unknown quadrant of the Johari window. For more information about the dynamics of the Johari Window, please review my earlier post on the background for this stage model.

Logically, anyone who is learning about stage one is no longer in stage one. So why spend time discussing bliss? As with many family and psychological dynamics, the seeds of later challenges are sown early on. Some of the patterns that can cause problems for childe and teen Aspies—not to mention adults with the syndrome—begin in first stage, when Asperger’s is still unknown. Patterns of sensitivity, excuse-making, blaming, protecting, rescuing, denying, etc. can all begin when parents and subjects are still ignorant of the syndrome. In some cases, these family system dynamics are themselves powerful forces that create additional complications later on. Subjects and their families who learn about Asperger’s at any point may find it useful to reflect on ways they may have been responding to Asperger’s without knowing it.

During the first stage, both subject and the family have a relatively neutral level of self-esteem and self-identity. As Asperger’s emerges from obscurity, self and family-esteem is one of the first casualties. It is rare for a family to learn about Asperger’s without suffering some sense of loss and inadequacy. Bliss is temporary, but it is a necessary and universal precursor to Stage Two: Inkling.

Please share your comments below. Have you experienced bliss? Do you sometimes wish you could regress back to bliss?

Check back in a few days for some thoughts on Stage Two.

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

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.

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