The Kid’s Alright, or Close Enough; My Asperger’s Diagnosis
by Rachael Lamb
My diagnosis of Asperger’s syndrome was many things but, mostly, a relief. As a thirty-nine year old female with volumes of symptoms that could never be properly named, I wasn’t surprised. What was shocking to me was how, after essentially giving up on the notion that I would ever have an explanation for the problems that had plagued me since debilitating childhood anxiety, obsessive compulsive disorder, emotional meltdowns, an inability to adapt to change and eventually substance use; someone did, in fact, explain it; easily. It just took half a lifetime.
I was a middle class kid from a normal family, not the product of abuse or neglect. Why the inability to cope? Why so many years of seeing doctors and therapists to get to the bottom of my inability to cope or function? Perhaps being a female, my Asperger’s diagnosis was not yet available. When I was a kid, the research involving women with Asperger’s had only just begun.
More than anything, I wanted an explanation for my parents. I knew they had spent a great deal of time wondering what they could have possibly done so wrong to have a daughter like me. But now my diagnosis checked all the boxes. Spending decades sifting through diagnoses was never necessary. It only took the right person to see it, someone that dealt with it every day. It was this therapist, who specialized in Autism Spectrum Disorders, and she had been at it for twenty years. She knew what to look for and was an advocate for women with autism and for new research in the field.
No parent wants to their child to be seen as a “problem,” and my own parents were no different in that respect. My unusual behaviors were acknowledged but not addressed. At least not for awhile. My symptoms were simply labeled as anxiety. My childhood was riddled with bouts of severe anxiety—no one could have predicted that a fire safety day at school would trigger an unreasonable and debilitating fear of fire. The fear would eventually lead to a battery of nighttime rituals; unplugging all appliances, including my parent’s coffee pot, packing my belongings and putting them by the window for a swift escape as the house burned down—it was imminent in my mind.
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I counted electrical outlets to be sure I ”checked the checks” and eventually it lead to other compulsive behaviors like toothbrush tapping, light switch flipping and rinsing the sink a certain number of times; all to keep the world from falling apart or burning down. As a small child, I didn’t know there was correct and incorrect behavior. I knew the difference between right and wrong but I didn’t know that all the kids my age didn’t do these things. I never thought about it because I never knew any different. By the time I reached middle school I was beginning to see that many of the things I did weren’t normal. I wasn’t “girlish” and I found what other girls did intensely boring. I wanted to play war out in the bushes and hide from unseen enemies in the woods. I liked building elaborate forts and stables for plastic horses.
Fears and anxiety changed forms constantly for me as a little kid, unfounded fears—getting lost, being separated, being forgotten, being kidnapped, nuclear war, nuclear power. It was a state of constant dread; it made me physically sick to think about. And I could not stop myself from thinking about it, ever. My family was stunned because I was never abused, my family was healthy, I was well cared for, so where on earth did this bizarre behavior come from?
It seemed without cause, out of nowhere—and growing up in the early 80’s, not quite bad enough to warrant too much attention. The times were different. No one was categorized like today. Today there is a category or a label for everyone. Back then there were people who were “crazy”, people who needed “special ed” and everyone else. It was black and white. There was no in between. There was no inclusion, no Individualized Educational Plans or special accommodations, at least, not where I lived. You did the work, or you failed. You fit the social mold, or you didn’t. Perhaps growing up in Maine left us isolated and behind the times, but there was no category for people like me. So I was encouraged to pull myself up by my bootstraps and get the job done. I heard what my parents and teachers said, and I knew what they meant but I couldn’t just snap out of it. By the fourth grade I knew I didn’t belong with the other kids, everything felt alien. The smells of the pencil shavings, paper, the bathroom soap and the cafeteria made my skin crawl. It was too bright, too loud and smelled like too much. Every day I was there, I wanted nothing more than to run.
Discrepancies in academics became more apparent with time. I tested so high in reading and writing on a standardized test, I was invited to join the John Hopkins Center for Talented Youth. I took the SATs and scored off the charts—only in reading and writing. Sadly, my math scores were so low, it was determined I was working at fourth grade level. It made no sense to anyone why I struggled so badly in one area and high in another. I refused to go to the study groups and refused to participate. I didn’t care because I couldn’t see or imagine what the point could possibly be, or how it could relate to my life.
I had no ability to imagine the future or excitedly set goals. Future, for me, didn’t exist the way it did for other kids– so it didn’t matter to me whether I took the SATs or not. All that mattered was what sat immediately before me, and school was the last place I wanted to be. I wanted to be home counting my light switches. The anxiety sat inside my chest like a coiled rattlesnake and never went away. Like being on the verge of tears at all moments.
Teenage problems were masked by phrases like “it’s just hormones”, “teenage attitude” and “it’s a rebellious phase.” My risk-taking, poor choices, and impulsivity became increasingly worse, the academic problem was embarrassing but manageable. The social issue was some other beast. To say “I didn’t fit in” is massively understated. The troubles I wallowed in were chalked up to a bad attitude. The schools administrators gave up shortly after teachers had, trying to get me to conform to their standards. I dressed how I wanted to—army jackets and jump boots. I avoided groups and vehemently criticized the popular crowd. I knew their pursuits were invalid and had no qualms in making that opinion known. I loathed what my peers were, ignorant to the world’s problems, shallow and wasted. Administration said I didn’t want to fit in and I made myself an outsider.
Times were different then and no one knew what they were looking at—I can’t hold that against them. It was a endless spiral that created a widening gap between myself and others. Going to Savannah College of Art and Design seemed more suited to me after my dismal grade school years. I imagined people that were more creative were perhaps less likely to judge. There was no way I would suffer through another strict academic setting. My symptoms did not fully fit the depression category I had been placed in, it seemed unlikely and I felt as though they were making guesses just to provide some answer. I changed doctors. The next psychiatrist said it was borderline personality disorder. My failed relationships all screamed out this diagnosis. But there were still gaping holes in childhood that didn’t fit. I changed doctors again.
Another psychiatrist diagnosed me with bipolar disorder. Perhaps his demeanor made his diagnosis less valid to me, unpleasant and unwilling to listen. I argued with him that his diagnosis didn’t fit. My “manic” episodes did not coincide with depression and so many bipolar behaviors weren’t present. I changed doctors.
This continued throughout my twenties and thirties. I didn’t want to take medication for half the symptoms, and no one seemed to care other than to push the medication they thought was correct. It felt as though I were hanging out in the wind. Marriage, children and trying to make a life was nothing more than going through the motions. I wasn’t present and drinking was my only physical escape. Drinking killed the anxiety and was relaxing. Except I always took it too far.
My last formal evaluation with an integrative behavioral health practice felt routine at the start and I was so jaded that I never asked questions. They suggested a therapist and a doctor for medication management. I assumed more of the same would be the result. I never questioned why they had sent me to a therapist who dealt primarily with autism.
The two doctors who did that evaluation said they were hesitant to hand out a diagnosis because they wanted to wait, gain more information—the process would be continual. I started cognitive behavioral therapy, something to put into practice.
It was this therapist who eventually shared the results of the evaluations with me—and took the time to explain the autism spectrum and the way these developmental issues can wreak havoc in someone’s life yet still go undiagnosed. She had seen every type of autism from the most severe to the most mild case. She instructed me in what to read and what to do for myself, to be proactive in dealing with it. The doctors had all been wrong and she went through all the reasons why these symptoms weren’t bipolar disorder, or borderline personality disorder. She explained how poor executive function can cause depression and anxiety as you scramble to function and how these things can mimic the symptoms of other problems. I trusted her because I saw her more than once. I trusted her because she listened and took the time to get to know me, not just what a set of evaluation questions told her.
The questions now had answers and the mysterious link had been found. My childhood finally made sense. It seemed hard to imagine that the answers were actually all there. It was hard to not dwell on the amount of time I had wasted unknowingly.
There were no prescriptions being handed out like Costco samples, no urgency to medicate. For the first time, I felt like someone heard what I said, took the time to delve just a little further. For once I was clearly understood and they actually knew what they were talking about.
As hard as I tried to argue the point that we don’t need these labels, I was put in my place by my new therapist when she explained that it having a label simply narrows the methods of treatment. A road-map or set of instructions. The label gives you the direction and where to move forward from.
Knowing who you are helps you to know exactly what you’re trying to pull together when it falls apart.