Reclaiming Identity after Asperger's Syndrome

A mother hugging her smiling son(BlackDoctor.org) — Around our house, trains have faces, best friends and really important jobs to do.  They line up on the floor in my son’s bedroom, waiting for their turn to be the pick of the week. Some lay toppled on the floor with static smiles on their faces because maybe they know it won’t be long until Kaleb comes and couples them into two very premeditated rows. The trains line up according to their relationship with the other trains and their very important jobs.

Each train is a character with its own function.  Symptomatic of his Asperger’s Syndrome, Kaleb relies on the predictability of labels to explain functions and has a great expectation that those functions or roles will stay the same. Not knowing what will happen next causes him great anxiety and ultimately leads to a meltdown.

Asperger’s: Every Child Is Different, But The Problems Can Be The Same

Every child with Asperger’s Syndrome is different; but the diagnostic criteria includes sustained difficulty in social interaction, development of restricted and repetitive behaviors and interests, and overall problems engaging in the typical back and forth conversation.

Some children with Asperger’s have no interest in making friends, but some have an interest in the idea of friends but don’t have the social skills and social understanding to do it.  For example, my son shows a fleeting interest in making friends.  As a toddler, he would scope the playground for a child playing alone and waddle his way over to sit in the same proximity, typically without saying or doing much of anything with the other child.  His idea of making friends was simply sitting next to another child.

Now, at six-years old, Kaleb is still on the same mission to make what he understands as friendships, but his approach to other children can come off awkward or uncomfortable.  As he does not understand many social customs, he cuts right to the chase and asks, “Are you my friend?” If the answer is yes, he immediately invites the child into his world of trains (with the occasional airplane flying by) only to discover that the child is not versed in his particular way of train handling and he is better off playing alone.

If the answer is no, an angry fit ensues.  No matter what happens, Kaleb always goes back to his trains, where each one on the railway is reliable, consistent and problems are easily fixed.  Each train has an identity, and that never changes.

Asperger’s: Identity Lost

Of his own identity, my son is quick to tell you that he is Kaleb, a six-year-old boy. It has taken him a while to get used to the fact that being called handsome or anything else positive other than his name is okay.

Something he is not ready to understand about himself is that he has Asperger’s Syndrome – although I am certain that Asperger’s Syndrome is a part of who he is, I am not at a point where I could say I wouldn’t change it for the world.  I would like to believe that this disorder does not make up most of his personality.

What I would change is the understanding of the disorder I’ve worked so hard to grasp since my son’s diagnosis in June.  I don’t consider myself an expert, but I certainly am amongst the people I know. People know so little about Asperger’s Syndrome, and autism in general; that it is hard to believe the American Psychiatric Association is considering erasing the separation between autism and Asperger’s Syndrome.  The autism spectrum disorders are so misunderstood that it seems counterproductive for researchers to take away its identity and throw it back in the pot.

Asperger’s: Trying To Find Identity Again

For Aspies who know they are Aspies, this change, like any other change, will not come as a pleasant one.  In Kaleb’s case, it bothers me to know that soon, the best explanation I’ll be able to give for his behavior is that it is something somewhere near the high end of a seemingly endless spectrum of disorders. An identification we’ve worked so hard to understand may soon be lost, but we are both learning that when things don’t line up perfectly and when things change that we want to stay the same, that’s life and it’s still going to be okay.

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