Post diagnosis, one begins to look backward, at the past, with new lenses. Sometimes this process can be painful, particularly with regard to relationships or unsuccessful employment situations. Other times this period of adjustment is full of meaningful discovery. Among the discoveries I have made, I think the most important has been how autism has shaped my life as an educator. For all my working years, it has been a silent companion, influencing my philosophy of teaching, defining my pedagogical values, and even affecting my career path.
I started out as a German professor, teaching foreign language and writing at Bard College, a small liberal arts school located in Upstate New York. My decision to get a Ph.D. in German had been a direct outcome of my high school and college undergraduate experiences, where I excelled academically, getting straight As, yet relied on my studies too much as a means of structuring my daily activities — to the point that it diminished my social life and development. This has had some long-term consequences, both good and bad. I think many aspies experience this phenomenon: having a different social sensibility, we turn to our deep and focused interests to organize our experiences and to compensate for areas of challenge.
My deep interests during these years included a fascination with meteorological phenomenon, particularly tornadoes (which still persists today), and foreign languages. I was a syntax and grammar nerd and enjoyed nothing more than comparing and analyzing the sentence structure of Russian with that of French, or copying out declensions in German, over and over again, just for the fun of it. In fact, my only friend in college was a fellow language-stim buddy who also liked to do these things and, in retrospect, was probably on the spectrum herself. Over the years, I studied many languages. As soon as I was out of college, I lived in Tokyo, Japan where I taught ESL for a year. I also spent two years as an undergraduate and later as a graduate student at Eberhard Karls University in Tübingen, Germany, studying Old and Middle High German. The modern languages just weren't enough for me!
The great thing about living abroad was that if I was awkward socially, others simply chalked it up to strange American habits. And if I wasn't able to track conversations swiftly — because I have difficulty speaking informally in groups larger than two to three people — then those around me thought I simply didn't understand the language. In other countries I was basically able to exist incognito; and yet, deep down, my real problem was that I was still invisible to myself — as an individual with Asperger syndrome.
Working as an instructor and, with time, as an assistant professor at Bard College was my first substantial job. On campus, I had a knack for staying under the radar. For 13 years, as I progressed through graduate school and completed a Ph.D., I sensed my invisible Asperger companion by my side while I was on the job, yet I didn't know how to name it. I avoided meetings with colleagues and didn't participate in committee work or attend faculty meetings. With fellow professors, I generally felt inexperienced socially and afraid of exchanges of any kind. At times, even my own students, who were easier to communicate with because they were younger than me, seemed more worldly. I did well teaching because my lectures were relatively scripted, and I knew my content (we aspies are good that!). I got good evaluations each year, but I wasn't building the social networks that are required for advancing in a university career. I did not know this was an important aspect of working in academic communities. I had no mentor, which I sorely regret today. I also didn't understand that as much as I wanted to do research and be a professor for the rest of my life, my chances of actually achieving this without self-awareness of my social and sensory differences were nil.
During this time, I also got married and had a child. My son, Elijah, was born in 1990, and in 1993, he began experiencing a terrible seizure disorder. By 1994, he was diagnosed with autism. With significant delays in speech and language development and in gross and fine motor ability, his needs were intensive. Oddly enough, I found my training in teaching foreign languages extremely useful in supporting my son in language acquisition. There are many parallels, in fact, in the development of speech and language for someone with a communication difference and the stages a person goes through in learning to speak, read and write in a foreign language.
Our home became a small educational laboratory. I read everything I could get my hands on about autism and found that my research into education and disability was becoming as far-reaching as the research I was doing for my dissertation in German literature and cultural studies. But Elijah was now the priority in my life, and my study of autism felt vital, something intimate to who I was and what we were living, while my study of German literature was theoretical, a haven that was removed from the hardships that swirled around us each day.
Once the seizures were properly treated, Elijah's speech developed at a clip. He transitioned from his early intervention program in a private special educational school to a self-contained classroom in our local public school. He moved along swimmingly, in fact, for several years, until the fifth grade, when he had an awful crisis. This was a time when Elijah sensed his difference from other children more acutely. He was truly friendless in school and fell into depression. Day after day, he was referred to the school psychologist's office, distraught and bewildered by an environment he felt unwelcome and unsupported in. Finally, I felt it was imperative to remove him from school altogether.
I took him to the beach to recuperate, and his happiness and confidence soon returned there. We rode bikes and had conversations about his difficulties in school. Most of them were due to his way of communicating, which centered on his deep interests in film and comedy. He often spoke in sound bite style, mimicking quotes and pulling segments of dialogue from favorite films, as a way making conversation and reaching out to others. He used these interests to make sense of, and participate in, social life.
As a young person, I had spent a great deal of my time writing in order to make sense of the social world around me. I kept journals in middle and high school, recording dialogue from experiences I had had in the hallways or in class, wondering anxiously whether I had said the right thing. I was zealous in my analysis of how I interacted with others, often taking long walks alone out in the desert (I grew up in the dry mesa lands of Colorado), rehearsing and repeating out loud, over and over again to myself, what I had said to someone earlier that day. Later, in my adult life, when I became an author and began publishing books, I would tell interviewers who asked why I had become a writer that "I write because I don't know how to talk."
Compared to Elijah, my way of compensating was more internal and language driven, in written form. I often withdrew in conversation, unable to keep up with the banter among peers. His method, on the other hand, was more extroverted and, you could say, performance based. He liked telling jokes and recited passages from Disney's Pinocchio, or later, from the films of the comedian, Jim Carey. In this way, I understood Elijah's pain in a school setting where his communication style did not match with others' way of being and socializing. However, I also knew that his means of compensation could possess a wonderful power of its own. And in fact, it did. Many years later, Elijah (who is 19 years old today) would become a standup comic, appearing on MTV and traveling the country to perform.
Those two weeks on the beach with Elijah were auspicious. It was at this time that I began to dream of creating a school for adolescents with Asperger syndrome. I had just published my first memoir with Simon and Shuster called Elijah's Cup. It was the story of our life together and our involvement in the grassroots, autistic self-advocacy community. For me, the book was an attempt at sketching the cultural parameters of autism, to bring it beyond our traditional medical and psychiatric understandings and to portray it as a way of life. My theoretical training in graduate school had prepared me for this kind of cultural analysis. Back then, I saw the autistic self-advocacy community as a burgeoning quest for civil rights, similar to the Black Pride or women's movements of the 1970s, and it has truly has become this today. After publishing the book and after Elijah's crisis, the next logical step, it seemed to me, was to get practical about this so-called "culture of autism." The most burning question for me was: how does one go about creating a safe, open forum for kids with autism to discover themselves and others like them? How could they become self-aware as autistic people? A school seemed like the way to go.
In March of 2003, I presented the design of my dream school — a full day program offering New York State Regents curriculum for middle and high school students with Asperger syndrome — to a philanthropist and founder of a nonprofit educational organization in our community. She liked the idea, and together we proposed it to our local public school administrators. They were thrilled because there was a dire need in the region to support students with Aspergers, particularly in this age group. Like Elijah, many of them were falling through the cracks educationally and emotionally, often experiencing more damage in their schools than authentic learning and growth. In three months' time, the program was filled to capacity with eight students. We opened our doors that September with fifteen full and part-time staff, all housed in a building next door to the public school. The development of the ASPIE School, as it was called, is a story unto itself. Suffice it to say, at last Elijah and kids like him had a place to be themselves and to explore their strengths and challenges.
The best parts of ASPIE were the projects and programs that were tailored specifically to the needs of Asperger youth. For example, our innovative PE class was a collaboration between the school and local educators in the theater arts who assisted us in developing an improvisation and non-competitive, group game-based program that allowed students get active (rather than be physically and socially passive) in their deep interests in video gaming, Yugio cards, or fantasy and adventure novels. Together with the amazing and dedicated ASPIE School staff, I also initiated a model for team planning and teaching that integrated instruction and therapeutic support directly in the classroom, with the aim of making general education academics genuinely accessible to kids with Asperger syndrome, who are quite capable of this level of work. Finally, I developed and taught a self-advocacy class where students learned about autism and discovered ways to value and harness their focused interests and to advocate for their sensory and social needs and preferences. Parents were happy and satisfied with the school; they felt their children, many of whom had been bullied or socially ostracized in their previous settings, finally had a community of their own. The majority of students themselves expressed having friends for the first time in their lives.
My long years as a mousey professor, skittering away from social interactions with colleagues and anxiously ducking out of public meetings were now over. Suddenly, I was the director of a school that doubled in size the following year, exponentially increasing the number of interactions I had daily with staff, families, kids and the administrators of school districts who referred their students to us. I had made the longed-for transition from the theoretical to the practical. I had managed to replace the exercise of study and research with real life, but for all the success the school was experiencing, I was struggling to keep up with the steep social learning curve I was on.
After long days on the job, I came home to more hours of anxious internal analysis of my dialogue and interactions with others at work, reviewing what was said over and over again to determine whether or not I had done something wrong. My lifelong struggle with insomnia and gastrointestinal issues (which can be common to many of us on the spectrum) had become nearly debilitating, and I became easily dysregulated. My sensory avoidant tendencies were off the charts. I couldn't be touched for weeks at a time, which in turn affected my intimate life with my boyfriend. As children with autism often do, I was holding it together at school each day, only to come home and fall apart. Though I had always known that I possessed shadow traits of autism, like many parents of children on the spectrum, this crisis prompted me to seek evaluation.
When I participated in a study at NYU Hospital, it was not a shock or surprise to me to be told I had Asperger syndrome. The biggest shock had already happened, when I hit the ground running at the ASPIE School after my departure from the ivory tower of the college campus. But sadly, in the moment of my diagnosis, which was the third year of operation at the ASPIE School, the very place that had compelled me to take the important step of getting evaluated, had to close down. A new superintendent was appointed to our school district, and with her arrival, the program lost support and funding. Although this was a tremendous loss in our community, in some respects it was a gift, too. Since that time, school programs have emerged in several locations in our region, as a result of the influence of ASPIE.
The closure of the school also gave me more time to learn about myself as a person with Asperger syndrome. As I have made this adjustment, I have also experienced a further deepening of my practices and educational values as an educator. I have taken time to examine the very best things about the ASPIE School and what made it so good for kids, families and staff. I have since worked as an independent consultant, developing and refining the work that was begun there, bringing projects and programs to schools and agencies around the USA, and more recently, abroad. The beloved PE program, for example, has since developed into a summer camp and after school model called Adventure Game Theater, with an original curriculum and detailed lesson plans.
The self-advocacy class I designed for students with Asperger syndrome is now a finished curriculum and professional development series called Integrated Self Advocacy TM. It consists of eleven units of lesson plans for teachers and therapists, as well a student workbook that contains a personalized Self-Advocacy Portfolio that can serve as a transition plan or as a resource for person-centered ISP enhancement (Autism Asperger Publishing Company, http://www.asperger.net). Founded upon the principles of self-determination theory, Integrated Self Advocacytm has applications across the entire autism spectrum, as well as in other disability groups. The purpose of the curriculum is to foster self-awareness and support the emerging self-advocate with autism in learning a variety of advocacy strategies. In a pilot program I initiated with the Office of Autism in New York City Department of Education's District 75 (a special educational district that serves more than 5,000 students with autism), we focused on a unit from the curriculum, adapting it for nonverbal older teens on the spectrum. In the pilot, students learned about the eight sensory systems, then, using a Sensory Scan tool, they collected information about the various environments they find themselves in daily at school, at home, and in the community. After gathering this data, students became more sensitized to what discomforts them or to what prevents them from learning or participating in activities. This information led them to create advocacy plans, which generally involved requesting an accommodation of some kind. Preliminary data on this pilot with the Office of Autism and District 75 indicates that students are experiencing less aggressive behaviors as a strategy for expressing their needs and preferences, replacing them with greater self-awareness of their individual environmental triggers and an ability to advocate for improved self-regulation.
Today I spend most of my time living and working in the world of the practical. I visit classrooms and residential programs nationally and abroad and present training seminars at schools, conferences and universities. Though I still possess many elements of the social anxiety I have experienced over the years and continue to struggle with sensory integration and speech processing, I have grown a lot. I owe this to knowing my diagnosis and to becoming an ever more self-aware person with autism. I am grateful to our community for releasing me from the ivory tower!
This article first appeared in Disability Studies Quarterly, vol. 30, no. 1 as part of a special issue, "Autism and the Concept of Neurodiversity," edited by Ralph James Savarese and Emily Thornton Savarese.
Friday: "Defining Autism"
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