By: G. Keith Bartley Jr., Self-Advocate
The term “autism” will rouse a range of emotions that is only exceeded in diversity and scope by the spectrum of individuals for whom it is diagnosed. Autism Spectrum Disorder (ASD) now affects 1 in every 59 Americans, and 1 in every 37 American boys. Pervasive as it may be, ASD represents the unknown reaches of human cognition, unapproachable in our rationale of “normality,” much less interpretable through understanding. In writing this short autobiography, I understand the wall of assumptions that I am faced with in disclosing a “disorder” to the public. So, before you read any further, I must emphasize the old adage, “If you have met one person with autism, you have met one person with autism,” just as you have only known one Isaac Newton: solitary and gripped by an obsession with sheer computation, or one Albert Einstein: though humorous and lighthearted in spirit, very outspoken in denoting acts of war and racism. What separates our knowledge of these, and all, individuals are their unique differences. Yet, as human beings we often seek to group individuals based on similar differences, and typecast them into something they are not.
In 1991, Dr. Con Slobodchikoff and his colleagues at Northern Arizona University published a study on the ability of prairie dogs to distinguish and communicate visual differences in the size, shape, and color of approaching objects. This act of survival represents our attempts to segregate each other on the most basic level. Originally meant as a mechanism for instilling cautionary discretion, intra-species discrimination based on such limited observations represents a paradox in human development. Are we so regressed in our evolution as a species that we are unable to recognize basic similarities of humanism, independent of race, religion, and ethnicity? Preconceived notions about autism, or any other disability, are no different. For every similarity between myself and another person, autistic or not, there will exist an infinite number of traits that make each of us unique. So, rather than perpetuate judgment of character based on preconceptions about ASD, I ask you to instead judge me in my similarities for excellence as a human being.
As a child, my personality could best be described in three words: Inquisitive, Obsessive, and Solitary. Born unto an age fueled by the commercialization of technology, computers easily became the main object of my cognition. Though unable to ride a bike or swim, by age 10, I could build and program a computer. My ability to solve complex technical problems fueled a curiosity in me that quickly grew to something unquenchable. I began to recognize this unique drive as a means to accomplish anything. However, overwhelmed by my then unreachable aspirations, my motivations would often succumb to feelings of self-deprecation, anxiety, and depression.
Distracted and unable to pay attention in class, the ability to teach myself became essential to my ongoing education. While my peers continued to practice simple regurgitation of incomplete material, I strove for holistic understanding, not out of genius, but because it was my only functional method of “memorization.” However, it was my passionate curiosity that truly propelled these efforts and allowed me to largely succeed throughout school. I now understand that it was the absence of application that made the material seem useless to me, not the material itself. Either way, I viewed the school’s use of my time as almost blatantly inefficient, and it made me despise learning. These feelings of resentment only magnified in 4th grade with my introduction to standardized curriculum. Prior to taking the TCAP (Tennessee Comprehensive Assessment Program) for the first time, it was carefully explained that, even with my good grades, failing the TCAP would mean being held back. Though this was actually just a lie perpetuated by my guidance counselor at the time, I soon realized that our entire curriculum was in fact aimed at these tests, making the process of reciting material not only necessary, but vital to my success and measurement as an individual. Consequently, any absence of understanding, always shadowed by my inability to memorize, only furthered those feelings of anxiety and self-deprecation.
Even as a child, I had trouble understanding why this measure of excellence was the only factor in whether or not to squander my intelligence, confidence, and determination for success. Discouraged, I often gained inspiration from reading about my idol, Albert Einstein. I found refuge in his portrayal of himself as someone with “no special talents,” but rather just a person who was “passionately curious.” He provided closure for what I felt, but could not say, telling me that, “Common sense is the collection of prejudices acquired by age eighteen,” and to “Never memorize something that you can look up in books.”
As an applied learner, I could not perceive information as anything other than a tool to accomplish something. The fact that I was good at problem solving made the prospect of memorization for standardized tests seem even more confusing to me. I hadn’t the ability to remember my own phone number, let alone definitions and listings of relatively irrelevant material. On the occasion that I could memorize something, I could not retain it longer than a couple of days. Einstein also addressed this issue, delegating that, “Education is what remains after one has forgotten what one has learned in school.”
In looking back, areas better served through understanding, like math and in most cases science, were extremely easy for me. This was because they required stimulation of a disproportionally developed portion of my brain. Conversely, reciting facts, definitions, and literary references in Reading, English, and Social Studies, was nearly impossible for me, regardless of how much I studied. So, in light of my talent and love for all things visual, my mother suggested I begin drawing storyboards to study topics I was having trouble memorizing. By illustrating complex visual references to scenarios, I could make the information relevant, and thus retain it better.
Though somewhat effective, this method was anything but efficient. While my unique strengths for visual recall did help compensate for my weaknesses in these areas, the process of developing storyboards was extremely time consuming, not to mention mentally exhausting. This became especially evident as I got older, when tests started becoming longer, playing to an even more detrimental factor of time, not only in preparing for a test, but taking one. In having less time during a test to process my often erratic methods of recollection, my anxiety level would go up, inevitably causing my performance to go down.
In 2009, Tennessee and New Jersey, as part of a 4.35 billion dollar reform aimed at K-12 education, were the first to receive hundreds of millions of dollars in an effort to enhance the standards and assessments used in effective high-stakes testing on the state and local education levels. Aptly, but almost belligerently dubbed Race to the Top, this competition-based program awards points to states based on standards aimed at the performance of teachers and principals. As a result, the only mentor to ever give me the tools to succeed, unable to condone these actions of legislature, walked out on our public education system. In the fall of 2011, my mother, an M.S. graduate of elementary education, took a $20,000 pay-cut during a recession, leaving her elementary school of almost 3 decades to teach at a private university located over an hour away.
In light of these events, I am left with the single resounding question of, “Why?” Why must we standardize our tests, our curriculum, and now, our teachers? Standardization is at the direct expense of the unique, limiting the curriculum, the teacher, and thus students to a scope of education and intelligence which is anything but representative of the complexity of human cognition. Considering the fact that ASD now affects 1 in every 54 American boys, how are these methods of standardization even justified? Whether through an actual increase in ASD cases, or simply an improvement in our abilities to diagnose differences in cognition, the last thing that kids need are limitations on their opportunities for intellectual growth. At least with standardized tests, teachers had the occupational freedom to circumvent the ignorance of federally imposed educational programs in order to better stimulate unknown corners of human brilliance, and salvage some measure of unique thought and talent from students like me. How is the next most logical step to limit, not only the information, but how it is taught? Perhaps, further limitation of the only human aspect of education left is the absolute worst thing in limiting the occurrence and persistence of ASD and other examples of cognitive diversity. Given the trend of growth among ASD cases, it is possible that standardized programs not only promote unbalanced cognitive development, but that they are also less likely to stimulate the uniquely partitioned cognitive strengths that it may or may not have enabled in the first place. Fortunately, my obsessive nature allowed me to overcome many of these deficits, enough to mask a “disability” for over 20 years. But, what should become of other students for whom autism exists independently of OCD and anxiety driven performance? Should they continue to exist merely as collateral damage of a system built on promoting the fallacy that is “average performance?” Einstein, humbled in his gifts of passionate curiosity, declared that, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” For me, 8 years of agonizing standardized testing procedures only weakened my will to perform and thus succeed. By the time I was ready to graduate high school, a student by nature born into unique thought, the “system” had beaten me down to nothing, and just in time to take the ACT and go to college.
I spent my first two years at the University of Tennessee trying to change from the person I was in high school. I desperately wanted to accept the fact that I would forever be a fish, stupid and deficient in its ability to climb a tree. Alcohol quickly became a tool for my social acceptance. I found that, in the right quantities, alcohol released my social-anxiety enough to allow me the aptitude to emulate the behavior of those around me. I soon realized life as an “artificial socialite” was a full time job, and, worse, that my grades were beginning to show it. Only after losing two academic scholarships did I realize that the socialite lifestyle wasn’t me. Consequently, I spent my last two years in my undergraduate major just being myself; building computers, reading papers, and absorbing every piece of information that I could get my hands on. To my surprise, I found college classes to come very easy to me. Invigorated with a new sense of confidence and unrealized potential, I decided to try applying my technical skills to research. Even when spending my own money to do undergraduate research, I found it to be the most fulfilling thing I had ever participated in. I quickly realized that, by turning my back on education after high-school, I had almost robbed myself of an opportunity to use the gifts I had suppressed all those years. I felt that behind my passion for research was a longing for understanding, based on the applicability of relative knowledge, instead of our society’s measure of common sense. In the words of John Dewey, I could finally escape “practicalized intelligence,” and instead begin to “intellectualize practice.”
A professor in Plant Sciences, Dr. Brandon Horvath, recognized my passion for research, and offered me a Graduate Research Assistantship. Once again inspired by Einstein, I spent my last summer as an undergraduate studying patent law, with the intent of filing a provisional patent before the end of the summer. Less than one year later, I published my first patent on limiting UV light stress in plants through the application of fractured algal protist cells. While I no longer felt like a fish incapable of climbing a tree, I still felt insecure in my abilities and perplexed by the academic inefficiencies that plagued me throughout school. It wasn’t until I was 23 years old that I went to a psychologist to finally uncover what was or wasn’t wrong with me. To my surprise, Einstein had been right. I wasn’t stupid or incapable, just different; a fish being measured on its ability to climb a tree.
Now in my second year at the Center for Autism Research, I am always looking forward. Invigorated by my passion for studying autism, I once again feel capable of almost anything. Consequently, I have decided to pursue my dream of attaining a PhD in Clinical Psychology/Neuroscience. In the meantime, I am also acting as a board member for ASCEND (The Asperger and Autism Alliance of Greater Philadelphia) and as a social coach under Carol Moog and the University of Pennsylvania’s Social Skills Seminar for young adults, utilizing my personal struggles and experiences to mentor and empower students. Throughout my career, I hope to indirectly influence ASD student success by directly supplying life’s pivotal role-players with the knowledge, tools, and methodology for promoting it. I do this in hopes of one day eliminating the barriers that separate cognitive ability based upon superficial measures. In our modern world of growing diversity, acceptance, and understanding, should there not also exist a growth in the range of information, opportunities, and ideas available to our children? Isn’t the exponential growth of ASD simply representative of human growth and diversification, and should our response to this be federal intervention to implement narrower educational boundaries at the expense of innate uniqueness? Are these children, your children, doomed to be the sand slipping through our tightly gripped fingers? The question I ask myself is, “How many kids have we already lost to a poor understanding of autism, and what can we do to keep from losing one more?”