Book Excerpt: A Word That Changes Lives

People have asked for a bit more of my story, so I have set myself the goal of finishing an autobiographical text in the next two months. That's quite an undertaking, but 58 days should be sufficient if I apply myself to the task. The real challenge is how to write an honest book that helps other individuals in some way. I'm not sure I can or will accomplish that goal. Autism spectrum disorders and the experiences that accompany ASDs are too varied for any one or any dozen memoirs to help explain what it means to be "autistic."

As I did with A Spectrum of Relationships, I'm going to post sections of the work in progress. I am not posting everything. I will be sharing primarily those sections that seem to need some reader suggestions for improvement before the complete book is revised and published.

When you read the text posted, please remember that the story of "me" is told from my perspective — which includes whatever biases I have, faulty and missing memories, and a fair amount of frustration. Do not hesitate to suggest a section be expanded for clarification or that I address a topic I might have omitted.

I previously used the subtitle An Educator's Journey, but that failed to capture how I view myself. I love words. Writing, reading, and teaching about words. So, I decided on this new subtitle. And now, the planned introduction to The Autistic Me: A Journey in Words. 

Autism. 

The neuropsychologist had said something about autism, right before I was distracted by a dog. Yes, a dog. More on that later.

#

You probably have an immediate, possibly passionate, response when you read or hear the word “autism.” Like most people, I associated autism with silent, rocking children who seem unaware of the world around them except for the random tantrum-like outburst. Though I had read various news articles about autism rates increasing and worried parents avoiding vaccines, my knowledge of the actual condition was limited.

My mother, a teacher’s aide in special education, works one-on-one with special needs children. These are the children I envision when I hear words like autism. I know I’m not alone, either. These children speak few if any words. They are cognitively and emotionally impaired to the extent that many will need lifelong supports. Autism, for the families of these children, is synonymous with “trapped.” In these situations, autism is an emotional and financial struggle for families and support providers. 

Autism, beyond my mother’s work, had no connection to me. I certainly had no connection to it. I had plenty of other physical limitations, including diagnosed cognitive and neurological conditions. Autism wasn’t part of my medical files, which were thick enough already.  

My first prolonged exposure to the word autism occurred in the summer of 2006 when I encountered an odd puzzle piece-shaped poster at Texas Tech University, in Lubbock. “Increase Autism Awareness,” it read. I was a session presenter at the annual Computers and Writing conference, which for some reason was being held in what another attendee referred to as “Satan’s favorite vacation spot.” Because of the combination of heat, wind, and reddish dust, I preferred to wander the halls of the university while others lunched outside or explored the campus grounds. 

I found myself reading the autism posters and bulletin boards announcing various research and educational programs hosted by Texas Tech. It was clear that someone at Texas Tech was dedicated to autism research for a personal reason. I probably learned something from the posted materials, but I was too focused on my future studies to give anything else much conscious thought. 

Not only was “autism” not on my mind, I was struggling in general to focus on conference presentations and events. My wife and I would be moving from California to Minnesota following the C&W conference. Moving is stressful for everyone, but this was a major gamble on our futures. 

#

Minnesota was supposed to be fresh start for us. The move would put behind me two decades of career turmoil and several previous attempts to complete advanced degrees. I had earned a master’s degree in English Composition Theory and Rhetoric, finally, at the age of 37. What I dismissed as a personal battle against my hyperactivity and intolerance for ignorance had been won. I had managed to tolerate people long enough to complete something. I was now going to attend the University of Minnesota and complete a doctorate, specializing in educational technology and immigrant communities. 

Things have a way of not working out as you expect, especially when you’ve convinced yourself a lifelong problem has gone away. The move to Minnesota went fairly well. The summer was spent with my wife, exploring and celebrating the apparent change in our fortunes. But, summer ended and school began. Within weeks the old problems reemerged. While the specifics will be explored in greater detail later, the basic circumstances will be familiar to many readers. 

I lost or quit, depending on how you view the situation, a job as an on-campus writing tutor within two weeks of beginning training. It seems I was awkward and made others uncomfortable. I had a tendency to tap my cane, which I used to maintain better posture and reduce back pain. When working with people, I seemed inattentive — the key word being “seemed,” which matters to most individuals. Though I could recite what someone had told me, a lack of eye contact and terse responses left students and staff believing that I didn’t care what they said. 

“It doesn’t seem that you want to be here,” I was told in a private meeting. “Maybe you should reconsider working as a tutor.” For now, I will skip most of the events that followed. This was not the last horrible incident at the university triggered by my personality quirks, and each incident invariably led to conflicts with staff and faculty. The university experience was a series of misunderstandings and miseries. 

The beneficial aspect of this early failure, the only positive I can count, was that I ended up in the office of Disability Services several weeks into my first semester at the university. After being redirected from the employee to the student division, my file was assigned to Lisa. She is personally inspirational, but what mattered at the time was her ability to quickly analyze situations. During a series of meetings with Lisa, I explained what I viewed as my health issues. I was also rather defensive about the situation at Minnesota, since I had never used Disability Services as an undergraduate at the University of Southern California. 

Yes, I explained, at Fresno State I had contacted the Disabled Student Services. I used a cane and sometimes needed transportation assistance across the massive CSUF campus. Getting from the room where I taught to the building housing the English department could be a chore. After tripping on a cracked sidewalk, I was told to seek the assistance. I didn’t think other problems I had at CSUF related to the lost tutoring post at Minnesota. 

What I did not know at the time was that Lisa specialized in both attention deficit and autism spectrum disorders. She quietly observed my behaviors and asked questions. By early October, I had supplied her with a partial academic history. It was while discussing my academic history that Lisa asked if I had a recent evaluation for ADD/ADHD. She said it wasn’t uncommon for students who were gifted to also struggle with attention deficit. I revealed that, yes, I had been diagnosed as ADHD about seven years earlier, but that the medications did not address my quirks. If anything, the medications and educational “therapy” made my personal life more complicated and unpleasant. 

I admitted to Lisa that I felt like a failure. Here I was, supposedly far above average in some ways, and incredibly below average in ways that mattered most to my success. Lisa knew she had an advantage: I was struggling and very close to walking away from my degree program. She also knew I didn’t want to disappoint my wife, so I was desperate to make things work. Lisa can be quite persuasive.  By November, she convinced me to undergo a new neuropsychological assessment. 

“Have you ever heard of Asperger’s Syndrome?” she asked.

I answered that I had heard the term but didn’t know what it meant. 

“Well, we think it is part of a range of disabilities known as autism spectrum disorders.” 

I wasn’t sure how to react. I was in my mid-30s, being told I might want to be evaluated for autism. Autism? Really? I thought to myself. The notion struck me as absurd. Autistic people don’t attend universities and they surely don’t earn academic honors. It sounded like another trendy diagnosis to me, which is how I now felt about my ADHD diagnosis. 

Lisa provided a list of educational psychologists and testing facilities. Though I was convinced nothing was really wrong and I simply don’t “mesh well” with other people, I agreed to call some of the local specialists for an evaluation. It took me a few days, but I did make the calls. The first two specialists I called had practices specializing in ADHD and learning disabilities. Both asked me a few questions and suggested I contact an autism and Asperger’s specialist. I decided to think about the situation a little longer. 

No, I told myself, there is no way I can be autistic. It was absurd to think that someone with an above average IQ, a member of various honors societies, could have anything related to autism. I decided to prove to myself that Lisa and the psychologists were mistaken to even suggest such a thing. I don’t have much faith in experts, especially in fields like psychology. 

#

Forty-two. After a half hour of answering questions, there was a large 42 on the computer screen.  As fans of the Hitchhiker’s Guide to the Galaxy know, the meaning of life is 42. That was my first reaction when I saw my “Autism Quotient” score. My second reaction was, “I wonder if an 84 percent is bad?” 

The University of Minnesota Disability Services specialist I was working with had politely suggested that I should spend a few minutes taking the Autism Spectrum Quotient survey or a similar self-administered test and then at least consider the results with an open mind. Using Google, I quickly learned that researchers at Cambridge University developed the Autism Spectrum Quotient, which was described in an article appearing in the Journal of Autism and Developmental Disorders in 2001. 

An AQ score ranges from 0 to 50, with numbers above 22 indicating the possibility of an autistic spectrum disorder. The Cambridge Autism Research Centre considers scores above 31 to be “very high.” Apparently the average score for an individual with Asperger’s Syndrome is 35. Okay, so a 42 wasn’t necessarily a “good” thing. Thinking it was a quirk of mood, I have answered the questionnaire in the months and years following. The score consistently falls within 42 and 45. Regardless of my mood, setting, or other factors, the results are within a narrow range. I knew that such “instrument consistency” meant I should pay attention to the data. 

What if some of my personality quirks were symptomatic of an autism spectrum disorder? I became fixated on the word “autism” and its horrible implications. To me, autistic meant intellectually and neurologically disabled. It meant those screaming kids who sat rocking for hours. My mental image come from outdated media depictions. Autism didn’t mean someone like me. Sure, I’m a little different. Okay, I’m odd. But how could I be autistic? 

I made another phone call. This time, I called a neuropsychology practice that specialized in testing to autism spectrum disorders as well as other learning disabilities. I’m not sure if I wanted to prove the AQ results to myself or disprove them. Personally, I think I’d still prefer a diagnosis of attention deficit, but I have also come to realize ADHD doesn’t preclude having an autism spectrum disorder. You can have an ASD along with OCD, PTSD, ADD/ADHD, and a long list of other acronymmed conditions.