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I’ve been debating with myself about this second post. I’ve thought about skipping over my “pre-diagnosis” years, and just focusing on my adjustment period after diagnosis, (along with some suggestions as to how the missional church might best disciple and love people with Asperger’s Syndrome). However, I’ve decided that this (very painful) part of my story is important, and so I am going to tell it (even though I am probably avoiding some of the most soul killing aspects out of self-preservation.).

Unlike kids with classic autism, there is no clinical speech delay in children with Asperger’s syndrome (i.e. we start to talk by the age of two). In fact, some, (but not all) people with Asperger’s Syndrome are highly intelligent and very verbal, and precocious language development is not uncommon.

I was one of those precocious babies. I started talking at five-and-a-half months and was reading before the age of two. There were a few hiccups in my development (I started walking a bit late), and I had trouble with sleeping (stopped taking naps very early and didn’t go to bed easily at night), but I was otherwise a very fine baby and toddler.

But as I got older and began to interact with my peers more, some cracks in my precociousness began to show. My pre-school teacher told my mom that I seemed “remote”. If cousins or friends came over to play, my parents would often find me sitting alone reading while the other kids ran around and tore up the house. Even more puzzling were the gaps in my abilities: I was considered a “gifted child” because of my reading and verbal skills, yet I couldn’t tell left from right or tie my shoes until I was eight. I couldn’t catch a ball. I never learned to ride a bicycle.

But the worst was yet to come.

I was officially a “weird kid”. I hated having my hair brushed (or even washed) so it was always a mess. I fought my mom on what I wore each day, so my apparel left something to be desired. The stress of being in a classroom turned me into a “daydreamer”, much to the frustration of my teachers. I couldn’t find ways of connecting with the kids at school: I didn’t understand social rules, games, or nuance, and so I was a bully-magnet. Each and every day that I went to school (from first grade well into high school) I was told that I was ugly, stupid, lazy, and weird. When I came home from school, I was exhausted and traumatized from the stress, and so homework was not high on my list. (Because my grades sucked and I was generally cranky, I got called more than a few names at home, too.) Recently, my therapist pointed out the irony in all this: My intelligence actually worked against me getting any help. Nobody wanted to believe that a smart kid might have problems beyond her control. My issues were instead alternately blamed on my parents’ divorce, the fact that I was adopted, antisocial tendencies, bad character, and laziness. (In fairness, I should note that Asperger’s Syndrome did not exist as an official diagnosis until I was adult. However, I still maintain that someone should have figured out that I had some very specific challenges and needs.)

Yet, it was also my intelligence that got me out my hellish childhood alive. Through logic and reason, trial and error, I managed to figure out how to get along in the world (even if I didn’t always do it very well). But the turmoil of my childhood had taken its toll: I entered adulthood with a tattered self-image, unable to trust anyone (not even myself), depressed, easily stressed and with extreme difficulty in setting realistic expectations for myself and others.

(Next up, answering the question “What is it like to have Asperger’s Syndrome?”)

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I’m not normal, and I have the papers to prove it.

See, back in 2003, I was formally (as in going through several rounds of psychological testing and interviews with two psychologists) diagnosed with Asperger’s Syndrome. I have my diagnosis on paper, in the form of a psychological report, which I can wave in front of interested parties in order to prove my disability.

For those of you who have not heard of it, Asperger’s Syndrome is a pervasive developmental disorder sometimes called “autism-lite”. People with Asperger’s Syndrome (nicknamed “aspies”) have difficulties with social interaction and tend to develop relatively narrow areas of interest on which we focus (some would say obsess) for extended periods of time. Many of us experience difficulty managing sensory input (i.e. smells, tastes, sounds, etc), have poor motor skills, and can be rather inflexible in our need for routine, ritual, and order.

Some adult aspies experienced intense relief after diagnosis. I, on the other hand, was pissed off. I looked back at thirty-four years of pain, suffering, and lost opportunities, and wondered why the hell God had let this happen to me. I also wondered why my parents, teachers and other adults who were supposed to act in my best interest didn’t see that there was something wrong with me (that went beyond being “lazy” or “acting out”) and try to get me some help.

Eventually the initial, most intense anger passed, and I was able to take a more level-headed view of my situation. The truth is that I was one of the lucky ones: Unlike many aspies, I had good relationships with friends and family members. I held a job and had graduated from both college and graduate school. I did not need to be medicated, nor had I ever been institutionalized or incarcerated. In other words, I was (and am) a functioning adult.

Still, I realized that there were a number of areas in which my condition had adversely affected my life and would continue to do so. The past four years have been a time of healing and self-examination as I have struggled to understand my past, live my present, and plan my future in light of my disability. I’m going to share more about this process in my next posts.

Thanks for reading.