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 A child who seems normally quiet or withdrawn might be masking AS incompetence that comes to the surface during adolescent attempts at friend-making or romance.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.
_________________________
My children knew at a very early age that they were different then their peers. When we finally told them, each in their own time, they were so relieved to know that it was not ther fault. I think parents know they just ignore the obvious because they do not want to deal with the issues or can't handle that their "perfect" children are not perfect. Unfortuatnely it is the child that suffers. Luckily society is more aware and becoming even more educated about ASD. Someone out there will help the individual figure it out.
ReplyDeleteThanks for the comment Elise. I resonate profoundly with the sense of relief that can come with the diagnosis. I am also trying to campaign against the fear and stigmatization of being on the syndrome. That's part of the point of this series! Thanks for the feedback.
ReplyDeleteI just "came out" to my husband and raised concerns that our son may be on the spectrum as well. His response was polar opposite from what I expected. He has been more patient and loving with both of us. He told me that he would try to remember my condition was the root cause of many things I do, and he has been more patient with our son's meltdowns and is trying to use social stories. My own self-esteem and calm have been so bolstered by his wonderful reaction. Today he said, "You know, I just want our kid to be happy and productive and I really don't care what that looks like in the end as long as it's right for him."
ReplyDeleteNiiiice.
ReplyDelete"Answers lag questions by months or years, and the intervening period is marked by decreased optimism and parent-esteem."
ReplyDeleteWell said, Peter. We had inklings that this child was different from very early on. He is the youngest of three children. We thought he was wonderful -- very bright (scary-smart, as we put it, because our older two were very bright, too, but this was something more) and yes, definitely, more ACTIVE...even as he would completely DESTROY his bedroom when we put him to bed at night or for a nap. That was maybe one of our earliest indications, which we have not realized until 9 years later, after diagnosis -- this child never sleeps!
When we first started having trouble in school (right away), the teachers and principal wanted to know what WE were doing wrong: What time does he go to bed? What do you feed him? Are there any problems at home? It was very frustrating and disheartening -- we were doing the very same things we had done/were doing with the older two and we never had any of these problems or issues before.
If this had been our first child, we would have been convinced that we must be the worst parents in the world...
The first signs I gave of being on the spectrum (hyperlexia) were disregarded as jsut signs that I was really smart (which wasn't a surprise, since my parents are both very intelligent.
ReplyDeleteThe next signs (that I know of) came when I went off to pre-school. I would't play with the other children; I spent the say hiding under the table. My parents were also distressed because when I did come out, for painting time, I would only use black paint.
I wasn't properly diagnosed as a child because I was born in 1967 and a proper Asperger's diagnosis wasn't available at that time and place. But there was a confounding factor: my older brother was diagnosed with leukemia when I was 2 or 3 years old and died when I was a month shy of turning 7.
That was a convenient event on which to blame all my "emotional troubles" and "behavior problems" . . . all the way up to when I was 15 and my parents started to worry that I was never going to "grow out of that grief."
I was finally formally diagnosed ten years ago, at age 34. I wonder how many other kids with asperger's or other spectrum conditions went undiagnosed because there was a traumatic event in their childhood and the adults around them found it easiest and most obvious to interpret everything about the child through the lens of grief and reaction to trauma.