*I would like to note that I am following the lead of adults diagnosed with autism who prefer the term autistic person instead of the person-first language (person with autism) previously taught as acceptable. Many autistic people feel that autism is inherent to who they are as a person and not something that they can choose to leave home such as an accessory (i.e. – a person WITH a handbag)
When I was first approached to write something for Autism Awareness Month, I wanted desperately to tell a different story than the one I ended up with. My first attempt at a story, read as an angry litany of all that had been wrong over the past 5 years. I didn’t want my story to be about anger or frustration.
About 25 years ago, I was newly graduated from college and extremely disappointed to find out that the real world wasn’t exactly amazing. I had moved back home with my parents (shock, horror, epic failure) I had very few local friends, no car, little money, and zero personal space. To further complicate my disappointment, I also could not secure the impressive job that I assumed would be simply handed to me on a silver platter upon graduation. Numerous childhood acquaintances would commute home from their jobs in New York City and head to the neighborhood “hot spot,” where my younger brother worked with a few of his childhood friends. I worked at a little store across the street and would often end up at my brother’s workplace to hang out after my shift.
I couldn’t avoid the humiliation that I felt upon seeing that everyone appeared to be moving forward while I still lived at home, was hanging at the local joint (as a regular) and didn’t have some fancy job in Manhattan. I despised being the girl who once prided herself on being smart, with a big future and now had to see the business clad nemeses from my youth succeed, while I just seemed to be hanging out at the local restaurant/ bar. (Ok…so calling everyone my business clad NEMESES is A BIT DRAMATIC, but I was only 22 and everything was indeed, a drama in my warped little brain) I thought I had something to prove. It seemed as if everyone was moving onwards to engagements, marriage, new homes, relocating to new cities and wearing designer clothes to their corporate jobs and I was nowhere. My noticeably cheaper clothing smelled of fajitas and cigarettes from my frequenting the local joint. Remember when smoking in restaurants was still a thing?
I attempted to secure a job in television since I had been a Communications major and I guess…..it was what I was SUPPOSED to do. The commute into New York was beyond stressful. I never enjoyed the cacophony of honking and indistinguishable constant chatter; the intermingling of unidentifiable smells; the constant urgency of motion and the general feeling of being alone while surrounded by so many unconnected humans. I did my best dress up attempt with my Rachel or Monica inspired 1990’s hairdo and outfit. I mean really…..What else did I have to model myself after at that age? I may as well have looked like the only unrealistic depiction of youthful twentysomethings I knew. (Young adults who could mysteriously afford to live in amazing N.Y.C. apartments and wear great clothing while working as coffee shop employees and non-working actors….it seemed reasonable enough to me) With my pale, yellow button-up shirt, waist-cinching pants and my usually wild, curly hair straightened, glossy and perfectly coiffed, I felt like a shell of myself. I felt somehow stifled. Breathing was difficult. I felt “outside of myself,” because the clothing was unyielding and scratchy. I basically had one long panic attack from the minute I boarded the overcrowded and noisy train…throughout the interviews and all the way back home….ON YET ANOTHER OVERCROWDED AND NOISY TRAIN. I am usually a bubbly and talkative person, but dress clothing has always made me unable to be myself; I instantly become withdrawn and feel almost unable to communicate. Perhaps the actual point of dress clothing is to force some sense of decorum and control over your personality but again….this just wasn’t me. Being out of my comfort zone and unable to find anything calm in my surroundings was too much to handle. Being constantly bombarded with sound and motion and a sea of unconnected humans was not the daily life that I wanted.
I swear this relates back to autism……..have patience with my overly verbose self.
A few months after my interviewing disaster I bought an adorable red, Toyota Corolla. I loved that car because I had earned it, but it had 200K miles on it and I often had to enter my car through the sunroof. (that old gymnastics training came in handy) I was not exactly stylin’, but I felt some sense of accomplishment. I also joined the restaurant crew with my brother and his friends. I was already always there anyway, so I might as well have been earning money while hanging out! Eventually, I had made a few friends at the restaurant but still didn’t entirely ever seem to “fit in.” I had never really felt like I “fit in” anywhere growing up but this would eventually become my greatest asset. I moved into a cute little converted attic apartment with one of my new friends. My world was becoming much more local and simpler than I had expected but things were starting to fall into place. I had already decided that continuing to remain in one of the quiet, comfortable towns near where I had grown up would be better suited to me than the hustle and bustle of the city-style, professional life. However, it would still be a while before I could let go of the guilt that I had somehow failed by letting go of what I had always believed I should do. Corporate job. Strong, assertive woman. Dress clothes. Living in New York City. Wasn’t that the measure of true success, even if it was only in my ridiculous mind?
One day, I was on my way to the funeral of a friend’s Father. This was before GPS or cell phones….or at least, before I could afford one. As previously mentioned, I was prone to anxiety when out of my realm of comfort. I was lost and randomly pulled into someone’s driveway with the intent to turn around. I felt that old familiar and joyous vasovagal feeling where your heartbeat starts to accelerate, your breath becomes shallow and that shaky, “I-am-almost-going-to-pass-out” feeling overtakes you. I looked up into the large bay window in front of me and the most beautiful little dark-haired boy was smiling at me, waving and flapping his hands excitedly. I felt oddly calm and smiled back. I waved. The calm didn’t last for very long and I was overtaken by nausea and a tight feeling in my chest. The little boy put his hand up to his window. I put my hand up to my window too. He laughed and began flapping his hands again excitedly, smiling at me the whole time. I waved, smiled back and then eventually left. I felt oddly calm after this interaction. I don’t even think I was fully aware of any connection, at the time, but immediately after this encounter I found myself constantly perusing the want ads for jobs in Education (remember those – in an actual newspaper).
I accepted a job as a teacher a few weeks later. My parents were probably less than thrilled at the horrible pay, in comparison to what I could have earned at a job with the newly up and coming Fox News. I had minored in special education while at school and I had also completed internships in various special education settings. Having earned an education minor and internship experience usually would not have been enough to qualify for a teaching job but the program I applied for was brand new and they were training young teachers interested in pursuing an advanced education. The job was training for a newer teaching style known as ABA, or Applied Behavior Analysis. ABA was supposed to be a promising newer way to educate autistic youth in an intensive one-to-one environment. It was supposed to be revolutionary in that its proponents claimed that autistic children could learn to speak and function better in a daily life and within a mainstream educational setting.
My new job would be the beginning of much personal growth and an eventual career but remember …… a journey is never a straight line.
I loved working with children and decided to tailor my teaching to their personalities and their overall response. If a child seemed agitated, I stopped. If the child was bored, I changed it up and tried to make it more engaging. I was reprimanded more than once. This was not what they had trained me for. I was to stick to their exact programming. I thought perhaps I possessed a generally bad attitude in handling criticism from supervisors that were basically THE SAME AGE as me. Remember, I still had a bit of a “chip on my shoulder” from not having that amazing life handed to me on a silver platter, so I would have been resistant to just about anyone. However, I think I was correct in my discomfort and it was beyond my possessing a bad attitude. Don’t get me wrong……. I absolutely DID have a bad attitude but there was more to it. I could never really shake the feeling that I didn’t like how the theories of this specific program treated the children. There was no openness to creativity and no attempt made to generalize the student’s learning beyond what appeared to be akin to basic dog training. I felt like these children were stuck inside of themselves, close to how I had felt in my dress clothing; feeling so much but unable to break free from that scratchy, confining “clothing.” Nobody seemed to want to hear what they were communicating if it wasn’t in the form of traditional language. There was a lot to hear if only someone was willing to listen in a different way.
I was immediately very connected to my first ever ABA student, “Little Mister I.” I loved his warm hearted, wonderful family as well and I began to work with him at school during the week, and at his home on weekends. One day he was bored with our usual, repetitive workbook. The activity we were working on required me to state “Show Mama!” and “Little Mister I” would have to touch his Mom’s picture. I decided to stray from the usual program and held up his Mom’s picture instead. I asked him “Who do you love?” He smiled at me and looked me in the eyes (another misconception is that autistics do not ever make eye contact – this is rubbish) “Little Mister I” looked at me and then at his Mom’s picture and I said “Mama!” He smiled at me and excitedly held her picture lovingly to his cheek and then flapped his arms. He looked again at me….and then the picture….and then again at me….sweetly saying “Mama!” Nervously we went downstairs from our work space and into the kitchen to find his Mom. Would he still make the connection? He sat on my lap, smiled at me and I asked, “Who do you love?” I didn’t even need to say “Mama,” for him to imitate. “Little Mister I” ran to his Mom, saying “Mama!” She cried. We both cried. He had never spoken a word prior to this. He was 5.
My time with “Little Mister I” ended after a few years, because ultimately I did not feel comfortable with extinguishing behaviors that I instinctively felt appeared necessary and natural to the core of who “Little Mister I” was. I couldn’t teach the way the program supervisors expected me to, so I was not a good fit for their program’s intentions. What had failed to be seen was that “Little Mister I.” did well with me because I respected him and allowed him to lead me into his world. We just trusted each other. Remember how I mentioned never truly feeling like I “fit in” anywhere? That awkwardness would eventually help me in my career (and in life) to understand people who also didn’t “fit in,” to others’ expectations. “Little Mister I.” had no formal language, but he spoke volumes with his beautiful, almost black eyes and I could hear his “words” LOUD AND CLEAR.
Being an ABA teacher may not have been the right choice for me, but the journey certainly did open me up to a whole new lifestyle that breathed life into a human who had been previously suffocating. “Little Mister I,” connected with me and saw value in me; a person who previously hadn’t seen value in herself. He taught me love.
Back to that day when I was having a panic attack in some random stranger’s driveway……………….
That driveway was in a town that was about 20 minutes from my home and probably 40 minutes away from the school that I eventually worked in. The first day at that new job I was escorted to the bus lineup by my supervisor who informed me that my student was new to the school, just like me! When the bus pulled up and I saw his face in the window, it immediately made sense. There he was again. That same beautiful, dark-haired, little boy. “Little Mister I.” smiled at me, flapped his hands and put his hand up to the glass. It was just meant to be.