Last updated on November 26, 2023
When did I ‘become’ the autistic me?
That’s a complex question and one that raises questions about the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association. This post, however, does not engage in a debate over the DSM-IV and DSM5 criteria for autism. Instead, I wanted to answer the question about the traits leading to my diagnosis.
Technically, the label autistic was officially applied to me December 4, 2006, following evaluations November 6 and 13.
My evaluation became necessary shortly after our arrival in Minnesota, where I was enrolled in the University of Minnesota’s doctoral program in rhetoric, scientific and technical communication. I struggled almost immediately in Minnesota, and the struggles increased each semester. This was disappointing, following my completion of a master’s degree at California State University, Fresno.
The most organized person I know is my wife, and she assembled quite the collection of medical documents and information for the evaluators in Minnesota. The opening of the 2006 evaluation states the obvious:
History is complex in his instance. He was delivered by breech presentation; forceps were utilized, entering the left frontal region, resulting in skull and facial fractures. Other birth injuries entailed spine trauma, temporal lobe damage, fractured left arm, brachial plexus injuries, and right-sided paralysis, which lasted approximately nine months. With respect to early milestones, of course, motor skill development occurred slowly, and Scott now uses a cane. Linguistic capabilities were strong…. Physical therapy was provided early on, as well as three times later, in seventh and eleventh grades, and again in 1997. Throughout time, Scott has grappled with sensory sensitivity in all realms. He uses dark glasses for light sensitivity. Tactile defensiveness appears to exacerbate with stress.
Notice there is no mention of intellectual impairment, only physical challenges originating from my complex arrival into the world. My birth was on time, I was a normal weight, and had the medical situation been better in the late 1960s maybe things would have been different for me. In an autobiography I started, but have yet to finish, I include notes from my mother about those first years.
My parents did not treat me as a fragile glass figurine. I’d argue that few people could or can tell that there were physical complications with the birth. Unless someone is paying attention, my right arm’s palsy, paralysis, and atrophy are largely invisible annoyances. My gait is odd, as I do limp slightly from back and hip pain, which doctors have theorized might relate to my scoliosis and the imbalance of my arm motions. Lower back pain is a constant for me.
The medical history continues with neurological issues.
With respect to further medical history, Scott encountered palsy tremors and ghost pains in sixth and tenth grades and again in the late 1980s and 1997 through the present. He is currently being followed for these conditions and takes a number of medications, including Neurontin, Ultram, Baclofen, Allegra D, methocarbamol (Robaxin), Prevacid, and Imitrex. Erb-Duchenne brachial plexopathy and palsy were diagnosed. […] Seizures ultimately surfaced in 1997 and, in June 1999, partial complex seizures were noted and Depakote and Neurontin begun. Migraines and seizures seemed to exacerbate in 2002 and, for a time, Scott was treated with Topamax. Since the spring of 2005, he has encountered a number of medication-resistant infections. Since October of 2006, the frequency of seizures has decreased to one or two episodes per year. Additionally, Scott is sensitive to heat. Sleeping is problematic for him. He seems to require only a few hours of nightly rest, indicating that he “works best at night.” Eating seems to be reasonable. Various diagnoses have been offered throughout time, including bipolar disorder, obsessive compulsive disorder, Attention-Deficit / Hyperactivity Disorder, mental retardation, high-functioning autism, and Asperger’s syndrome. In 1999, Wellbutrin was prescribed for depression and Ritalin for Attention-Deficit / Hyperactivity Disorder. Additionally, complex partial, Jacksonian, and night seizures have been described, as well as neurological signs of possible multiple sclerosis.
Reading the above exhausts me.
The best person I know is my wife. She has been along for this journey through medical mazes, including various efforts to determine why I struggled to complete graduate school during several aborted attempts to pursue a teaching career. We pursued answers without other family members being aware of the extent of challenges.
I have always been decent, if not great, at hiding the physical pain and intellectual frustration I experience. Sadly, my wife endured my worst collapses and anxiety — especially my low self-esteem from failing repeatedly to secure a career. I loathe myself much of the time, painfully aware that I have not accomplished much of anything. This leads me to feel inadequate and unworthy of someone as special as my wife.
Hiding anxiety from an early age has required a lot of effort. I recall having anxiety on the bus as a child in Bakersfield. That would have been kindergarten. What the anxiety was has faded with only a sense that I was awkward and strange. The anxiety was more significant in high school and beyond, when I was more aware of being different. Was I merely a geek with some social deficits or was there something more isolating me?
The few people to know me since elementary school point out that was I student body president in sixth grade. What they don’t recall (or maybe don’t realize) is that it was something of fluke, even a hoax of sorts. I wasn’t popular with my classmates, but a really nice fifth-grader led my campaign. She was kind and well-intentioned and just an overall good person. Winning that election led me to imagine I might be popular with other sixth graders, but it was obvious enough to me that others were more popular and would remain the popular kids into the future.
By the start of junior high, I knew other people tolerated me (at times) but were not my close friends. Other outsiders, the other gifted geeks interested in computers and chess were my companions. I remained horribly anxious through junior high and into high school. I was (and am) able to hide this state through my skills with language and a decent “stage presence” when speaking in front of groups.
Curiously, neuropsychologists have measured the anxiety even as I have tried to suppress it. It’s strange to have yourself described to you despite trying to hide everything from other people — especially teachers, counselors, psychologists, and psychiatrists. The 2006 evaluation states:
Personally, Scott has always encountered intense anxiety. He has difficulty functioning in groups, as well as understanding social subtlety and nuance. A sense of rigidity is evident, and he tends to be very self-deprecating, internalizing anger. Transitions are problematic for him, and he does best with routine. He can be somewhat obsessive, especially with computer-based tasks, displaying some perseveration. Apparently, seizures affect short- and long-term memory skills. Of course, stress exacerbates symptomatology. Scott attests to an extremely high level of mental energy. He enjoys teaching and lecturing. With increasing apprehension, he has learned self-calming techniques. Logical thinking skills are highly valued by Scott, and he is rational and at times very literal. For the most part, he does best with order and patterns. Mood swings can be severe. For the most part, he prefers being alone, doing well in confined spaces. At times, Scott displays burst of creativity, writing books and completing plays and novels in his head. He frequently overanalyzes and worries. Further, he reports persistent “white noise,” as well as “blank periods.” Anxiety and panic exacerbate after palsy episodes. Scott has a number of prescribed interests, including… philosophy and digital rhetoric. Because of strong facility for pattern learning, he is able to speak a number of languages. He also enjoys mimicking, animation, and voices.
The conclusion of the evaluation states that the autism is likely related to the brain trauma at birth and exacerbated by the seizures that persisted from the age of 29 through 38. Quite simply, my autistic traits are likely the result of injuries, not a genetic predisposition, but the doctors have said this is not a certainty. With autistic traits, there is something of a guess as to the origins of the diagnosis.
Neuropsychologically, Scott presents with a complex history, driven by significant physical trauma at birth. He does have a seizure disorder (which is treated medically). Imaging reveals specific left frontal and temporal lobe injury. A progressive neurological disorder is not ruled out. Characteristics of high-functioning autism, resulting from the brain trauma, are apparent. Attentional / executive elements are also noted, frequently occurring in conjunction with cerebral trauma. Right-sided weakness and palsy (tremors) persist. Inherent with the above-described patterns, as well as a reaction to environmental variables, self-deprecation and anxiety are evident. (Further, medical treatment affects his performance.)
The most clearly autistic trait I have is the inability to “read” other people accurately. I failed miserably at the tests for emotional and facial recognition not only during the 2006 evaluation, but during earlier evaluations and since the 2006 diagnosis. This seems strange to me, since I write about people and consider myself reasonably good at vocal tones. My wife, however, agrees with the doctors and so do my few close friends. I misread people constantly, so I should ask what they mean and what they are feeling. When in doubt, ask questions. Too bad I forget this good advice.
With respect to high-functioning autism, Scott displays a number of salient characteristics. Facility for social interaction is hampered with flat affect, limited eye contact, and compromises relative to the understanding of subtlety and nuance. Scott encounters difficulty with “theory of mind,” understanding what others are thinking. He is literal in response, experiencing reduced self-monitoring skills, thus, at times, verbalizing impulsively. Concomitantly, cognitive rigidity is evident with a good deal of literalness, misunderstanding of the theoretical and esoteric, and a strong need for logic, structure, and clear patterns. Thus, “gray” situations at all levels can create uncertainty and anxiety. Paradoxically, at the same time, Scott can be highly creative, displaying strong writing skills. Further, as at times noted in such instances, sensory sensitivity is evident, exacerbated by apprehension.
Another problem I have is with memory. Following the seizures, I lost chunks of my longterm memory. There are events I should remember, but do not. This includes several hospital visits. Some of my memories are missing. It’s a strange feeling to look at a photo or hear about an event and not recognize the moment. Maybe that’s for the best, in some situations.
With respect to attentional / executive skills, Scott displays a number of limitations, which, as noted, are frequently seen in conjunction with this type of trauma. Facility for speed of information processing is lower (and task execution certainly confounded by the fine motor issues). Efficient recall of new incidentally presented material can also be problematic for Scott, as well as skill with rapid retrieval of information. Thus, his complaints regarding memory reductions are legitimate.
Needless to say, Scott displays numerous strengths, being most comfortable with concrete, clearcut, factual material. His long-term memory is excellent. Facility for numerical analysis is quite good, and he does especially well with arithmetic conceptualization. Generally speaking, he is more comfortable with logical technical pursuits, doing well in terms of visual detail, spatial processing, and abstract visual perception. Certainly, his general reading skills are intact, and he displays strong writing capabilities.
At least I can write. Though I’m not always confident of that ability, since I have only had a little success as a writer. Though others reassure me that I am a writer, I dismiss my published columns and the books to which I have contributed. I feel like I could have and should have written something significant long ago in my career. There should have been a novel, a movie, a major play… something before the age of 40 and well before 50.
From relationships to education to personal accomplishments, I feel inadequate. I keep lists of my failures and shortcomings, obsessing over what I should have done and what I could have been… if only I had been more focused and better with people. My social failings contribute to my other failings, which makes me dislike myself yet more. It’s a horrible downward spiral. Failure and self-doubt lead to yet more failures and more extreme self-doubt.
Clearly, the social / pragmatic limitations associated with high functioning autism have impacted Scott emotionally. Coping skills, for purposes of allaying anxiety (secondary to misperceptions) have entailed a predictable, structured, and isolated lifestyle. Defensive responses related to control have become quite evident with perfectionism (including obsessiveness) and the need for clear, logical, literal, structured explanation. Thus, through time, Scott has engaged in significant self-criticism and personal questioning.
The purpose of the 2006 evaluation was to rule out something serious that might limit my ability to complete the doctoral program and pursue a teaching career. At the conclusion of the evaluation are the accommodations that were submitted to the university’s disability services office.
The following suggestions are offered on Scott’s behalf:
- Involvement with a cognitive strategy specialist who can provide guidance and support and additionally act as a liaison for Scott.
- In all environments, focusing on Scott’s strengths, minimizing situations which enhance anxiety.
- In the educational realm, keeping in mind Scott’s highly complex neuropsychological profile and providing him with accommodations. Specific suggestions include:
- As Scott does well with logical, analytical pursuits, planning for involving him in these specific endeavors, which are very analytical and didactic, through research and teaching.
- Hand selecting professors / instructors for Scott who can provide support and flexibility, accommodating his thinking patterns.
- Of course, remembering Scott’s significant fine motor issues, offering assistive ‘technology as a compensatory tool.
- In conjunction with the above, using a dictation format for writing, as well as voice-activated software.
- Enhancing organizational skills with persistent usage of a PDA (for planning) and notebook computer (for note taking).
- Keeping in mind slower information processing and performance speed, allowing more time for test taking, academic as well as standardized.
- Offering examinations in a quiet and private setting.
- Of course, as much as possible, providing written instructions / directions and class notes. When appropriate, providing a note taker.
- Secondary to Scott’s tendency toward boredom and inattention, making sure the learning environment is reasonably distraction free and providing preferential seating.
- Because of variable memory skills, supplementing the auditory with visual input. In learning to consolidate new information, in addition to providing reiteration, supplying clues and cues, as well as making clear applied comparisons and practical generalizations.
- Again, due to temporal difficulties, providing assignment modifications with longer and more complex projects and/or extended time lines.
- To enhance reading comprehension, considering a Kurzweil scanner (see attached).
- Within the university setting, aligning Scott with an advisor or guarantor who can provide routine monitoring and feedback, as well as guidance for teacher and course placement.
- Of course, persisting with medical support and treatment.
Am I The Autistic Me or am I simply an awkward geek prone to academic and career failures? That question is what led me to create this blog and why I still continue to post entries.