Desperation: The Third Stage of Asperger's Awareness

DESPERATION:

Though ignorance is bliss and inkling is promising, there is a dip of desperation before dawn breaks. The stage of desperation is the time when we know enough to be disturbed, but not enough to take action. Sadly, desperation is not the bottom—that comes later…

In desperation, parents move from suspicion to certainty. Rather than wondering if their child is really different, parents begin to catalog and investigate those differences. Since most of the differences are problematic, parents are usually investigating as a matter of self-defense. (Nobody gets hot and troubled trying to “solve” musical talent or prodigious intellect.) Those suffering from what I call Asparent’s Syndrome are more likely to need support and understanding.

In our family, we entered desperation on the first Friday of our son’s first-grade year. Before he went to school, my wife contacted his new teacher and informed her about some of David’s “different” behaviors. Mrs. S., who has since become a dear family friend, responded to my wife and said, “I see what you mean.” The teacher gave us external confirmation that we weren’t imagining things. While it verified our sanity, it also drove us straight into desperation. I can draw a direct line from that Friday message to the day an IEP team determined that David was on the Autism Spectrum. The period between validation and diagnosis was a fearful and desperate time. But it helped us along the way toward a better day.

For parents, fear escalates along with certainty and clarity. For the subject, the path through desperation may look different. To some degree, the subject with Asperger’s is not as motivated to figure out what’s up, but how to get along. As Temple Grandin has famously observed, the child with Autism/Asperger’s must learn how to imitate proper human behavior. Thus, the child’s focus (or teen’s, or adult’s) is less about labeling the condition, and more about learning to live with it. For me, as a child with Asperger’s, I didn’t care what I was. I just knew I was me, and that parts of me were unacceptable. I didn’t have enough ego development to reflect on how different I was from the norm. Instead, I learned (very imperfectly) to suppress the parts of me that seemed to provoke ridicule and hostility. I also tried (very clumsily) to accentuate the parts of me that earned praise and acceptance. The result, common to many with Asperger’s, is the emergence of a survival system of masks and façades and the practice of rapid identity switching. Some with Asperger’s are better than others, but all of us expend tremendous energy trying to cope. It is hard and desperately so, but it is a desperation for doing rather than the desperation for knowing common to our Asparents.

In the season of desperation, knowledge about the symptoms moves completely out of the hidden quadrant and across the blind and public arenas. As parents seek answers, they talk with the child—which makes it clear that the behaviors are under observation. At least within the family domain, desperation is public.

Some aspects of how people—even parents—perceive Asperger’s behaviors may remain unknown to the subject, so desperation is an appropriate time for parents to provide gentle and caring feedback. This feedback should not take the form of demands, accusations, and ultimatums. Instead, parents might choose an inquiry approach. Asking a child to compare his or her behaviors with peers in similar situations is a non-judgmental way to begin identifying and discussing non-standard behaviors.

The reason parents must be careful and protective during this stage is because the child’s sense of difference is now an open issue and has negative impacts on self-concept and self-esteem.

Desperation can be a brief season, but it is real and necessary because it drives the discovery and diagnosis that begins a walk into the light. Fortunately, that light is coming.

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