At birth, doctors suggested I would be mentally disabled, in addition to the physical injuries I suffered. I have never been described as normal. “High-functioning autism” (HFA) is just another way to describe a few aspects of “me.” The autistic me is the creative me, the curious me, the complete me.
Okay, here's the last bit I'm going to share online from my 2006 "re-assessment" that was requested for the University of Minnesota Graduate School. Remember you are reading an excerpt from my upcoming book, not the full chapter. However, your questions and suggestions will help me craft a better book.
And yes, I am still reminding visitors that my book A Spectrum of Relationships is available from the two biggest online bookstores for $2.99. I appreciate how supportive readers of this blog have been.
Dealing with the Assessment (and Some Denial)
The Doctors Conclude…
Neuropsychologically, S. 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.
I’ve had a few scans of my brain, along with the unpleasantness that was two EEG (electroencephalography) tests for seizure disorders. It takes almost an hour to place the electrodes for the EEG, which also requires an immediate shower afterwards. The scans are at least done without the mess, though I won’t argue that the claustrophobic tubes are enjoyable. The last two scans did include classical music, which was interesting.
Some of the imaging and EEG tests have shown a reasonably normal brain, without any unusual features. But, not all of the tests were normal. One or two of the scans revealed “oddly balanced” brain activity according to records, with more activity on the right than the left hemisphere. I have no idea what to think of differing results and interpretations other than to state that I seem to have done well enough in life regardless of any abnormal findings. What is the “specific” injury this neuropsychologists found interesting? It implies a clear, precise, “you can’t miss it” on the video screen, blotch.
The last two sentences are the troubling ones. “Progressive” is great when it refers to a slot machine jackpot. It’s not a great word when you’re describing a potential neurological disorder. It’s a bad thing. A very, very bad thing. You get the point. And if that was not upsetting enough, the psychologists decided I have “characteristics of high-functioning autism,” which means they do consider me autistic.
The primary psychologist said there’s no way to know if I “would have been autistic anyway” or if a birth trauma altered things. At least one neurologist suggested a positive spin on this: birth trauma might have countered some of my autistic traits. How is that possible? The brain could have responded to a physical injury by “rewiring” itself. The doctors admit, however, that it is more likely that my birth caused everything — which means I would have been “normal” if things hadn’t gone wrong. Nobody knows for sure, though.
Was I genetically predestined to be different? The neuropsychologists told me that you are born with a developmental disorder, and most research confirms this. There is also evidence that certain injuries and illnesses can affect an individual’s personality. Maybe I was “made” autistic? I don’t know and will never know what might have been.
This leads me right back to the question of bitterness and blame. I can’t really say I’d like to be normal. I think I would, but how would I know? Maybe normal isn’t that much better. What I know is what I am; it’s all I’ll ever know.
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.)
My mind wanders under stress, seeking anything familiar and relaxing. The more stressed I am, the more likely I am to shake. Without realizing it, I must have been shaking rather obviously during the evaluation. I’m not sure what I said, but it seems to have been self-deprecating. That phrase, “self-deprecating,” appears several times within the formal assessment report. This is an issue that appears throughout this book, as well.
I have no doubt that my medications for pain, migraines, and tremors slow my performance on any test. I sometimes feel as if I am moving in slow motion, then I realize I am moving or thinking slowly. Thinking slowly and believing that I am unable to interact well with people leads me to avoid social interactions, which are mentally demanding.
“Lousy guest at parties and social gatherings” isn’t technical enough, so psychologists write things like this:
Facility for social interaction is hampered with flat affect, limited eye contact, and compromises relative to the understanding of subtlety and nuance. S. 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, S. can be highly creative, displaying strong writing skills. Further, as at times noted in such instances, sensory sensitivity is evident, exacerbated by apprehension.
Yes, my “theory of mind” is all mixed up. I don’t understand how people think, why people play emotional games, or why honesty is only sometimes the best policy. I’ll also never grasp how people manage to enjoy sunbathing, nightclubs, or wool clothing. Humanity is a mystery to me, but an interesting mystery. That’s why I write.
With respect to attentional/executive skills, S. 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 S., as well as skill with rapid retrieval of information. Thus, his complaints regarding memory reductions are legitimate.
Because it takes a long time to interpret idiomatic speech, body language, and social rituals, I prefer to remain in the realm of facts and figures — except when I can view humanity as a research project. If I can remain hidden, recording the wildlife in their natural habitat, I’m much more content.
Needless to say, S. displays numerous strengths, being most comfortable with concrete, clear-cut, 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.
The problem with having a bias towards hard science, with clear facts and the underlying organizational power of mathematics, I expect my life to be organized and predictable. When things go wrong, I often panic. I don’t like to make mistakes and expect more of myself than I would of most people. If I am smart, as many “experts” claim, then I should be able to accomplish more, with better results, than most people. So far, I haven’t done much of anything.
Clearly, the social/pragmatic limitations associated with high functioning autism have impacted S. 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, S. has engaged in significant self-criticism and personal questioning.
The neuropsychologists prepared a list of suggestions for the University of Minnesota’s Disability Services. Since it was DS that originally suggested the new assessment, this list seemed to me to be the primary purpose of the exercise. I did not seek most of the recommended accommodations. Some of the suggestions in the report include:
In the educational realm, keeping in mind S.’s highly complex neuropsychological profile and providing him with accommodations. Specific suggestions include:
Involvement with a cognitive strategy specialist who can provide guidance and support and additionally act as a liaison for S..
As S. 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 S. who can provide support and flexibility, accommodating his thinking patterns.
Of course, remembering S.’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 S.’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 S. with an advisor or guarantor who can provide routine monitoring and feedback, as well as guidance for teacher and course placement.
After reading what doctors had to offer in terms of a diagnosis and suggested accommodations, I was surprised the person they were profiling had any success at all. I had to remind myself that they had evaluated me, not someone else. However, don’t know that the evaluation had much of an effect on my experiences at the University of Minnesota. My graduate experience was only slightly different from those of other doctoral students: I dropped some courses I didn’t enjoy, took courses I knew matched my personality, and shuffled my dissertation committee twice. I was one of the few in my cohort to graduate in four years. How “different” neurologically could I be?
My wife is quick to answer when I suggest I’m not different. She insists my brain is different, because she’s talked to the doctors and remembers more of what they have told us. I’m not “normal” no matter what I sometimes want to believe. In her view, the neuropsychologists were simply reiterating what previous doctors had suggested when the lead psychologist bluntly stated, “You are a high-functioning autistic. You meet the criteria.”
No matter what label is affixed to my medical files I am first and foremost a writer. Maybe it will be possible to make a difference being both a writer and a person with autism. After the evaluation, I had to hope there was a purpose for this information.
There was now an official label on my difficulties. I was relieved, depressed, curious, and frustrated. I did not want the label “autistic” and yet it also explained many of my own observations. My wife had no doubts at all and neither did Lisa. Actually, I think I was the only person voicing any doubts, wondering if some other label might be found. There is a stigma to autism — I know, because I had several prejudices concerning the word and the condition.
With respect to high-functioning autism, S. displays a number of salient characteristics.
Autism. The word changed my life.
Is “The Autistic Me” an accurate description of some part of me, or the result of ever-changing trends in diagnostics?
I anticipate the nuanced answer I offer is going to be taken out of context and misrepresented by some people and groups. That’s simply the nature of autism debates and discussions, in which the integrity of every advocate is challenged by someone for some reason. Though I assume being frank will open me to some criticism, I believe I should offer the nuances of what the “autism” diagnosis means to me. And so, I offer the following disclosures:
Nuance 1. Psychiatrists, psychologists, neurologists, and schools have applied different labels to me. Only two university Disability Services’ advisors have suggested Asperger’s Syndrome, while two neuropsychologists and one psychiatrist have used the designation High-Functioning Autism in writing. Apparently, HFA is not a consistent category. One assessment assigned a diagnostic code of “299.00: Autistic Disorder” and another used DSM code “299.80: Atypical Autism.” There is something subjective about the diagnoses.
However, the 2006 report also emphasized my “complex history, driven by significant physical trauma at birth.” Before 1999, no health care professional used the “autistic” label to describe me. This leads me to lean towards the “299.80” designation, which is “Pervasive Developmental Disorders” (PDD) including those “Not Otherwise Specified” (PDD-NOS).
The problem with me deciding between 299.00 and 299.80 is that I am not a psychiatrist or psychologist. I have not been trained to administer and interpret test results. I just happen to prefer, emotionally, not being diagnosed with “Autistic Disorder.” This also means I am admitting to being uncomfortable with the diagnosis of autism, no matter which category is used. Admitting discomfort places me at odds with those individuals embracing diagnoses of ASDs.
Nuance 2. Because I was diagnosed with “brain trauma” and “seizure disorder” early in life, some suggest autism is an invalid diagnosis. The DSM and ICD do state other developmental disorders should be eliminated as possible diagnoses, but physical injuries and other causes are not explicitly listed as disqualifying an autism spectrum disorder.
If my injuries caused my autistic traits, that also required I accept that autism can be caused by external factors. At the same time, I also believe most autism diagnoses are genetically based (but not necessarily hereditary). Genes experience random errors during replication. These errors seem to increase the likelihood of a child developing autism. What if I have a genetic predisposition towards autism, and the birth trauma was simply that extra “bump” into being autistic? I admit I have clue what made me whatever I am.
Nuance 3. The criteria for diagnosis require specific traits be observable and quantifiable. There are people with “autistic traits” who are not autistic according to some clinicians and researchers. One missing checkbox in the criteria and the child has some autistic traits, but not autism.
Like many diagnosed with either 299.00 or 299.80, which will be merged to some extent in the DSM-V, I have bad days and good days. If I’m evaluated on a day when I’m stressed and have been over-stimulated, then I’m going to meet the diagnostic criteria easily and obviously. On a good day I might seem almost completely normal. My wife or family might notice the little things, and a well-trained clinician should notice them, but not everyone would.
Part of me wants to believe the Wechsler intelligence test and the other instruments used to categorize me are slightly more reliable than phrenology. Okay, maybe significantly more reliable than phrenology, but that’s open to debate. What I don’t question is how the results alter the courses of lives, especially when our educational system places students in programs based on the results of intelligence testing. The evaluation in second grade certainly affected my life by increasing the supports I received from Visalia Unified School District. The VUSD resource specialist, Mr. McC, changed my life.
The observations by the evaluator can be interesting — much more interesting than the test itself. Maybe a strong defender of IQ tests can persuade me that my perception of the tests is misguided. Yes, intelligence is reflected in the results, but they also reveal cultural awareness and familiarity with a vocabulary. What about a smart person, even a genius, who hasn’t seen or heard some of the vocabulary? You have to have been taught certain skills to perform well on the assessment.
"Aren't people with Asperger's more likely to be geniuses? Isn't genius related to autism?"
A university student asked this in a course I am teaching. The class discussion was covering neurological differences, free will, and the nature versus nurture debate. The textbook for the course includes sidebars on the brain and behavior throughout chapters on ethics and morality. This student was asking a question reflecting media portrayals of autism spectrum disorders, social skills difficulties, and genius.
I did not address this question from a personal perspective in class, but I have when speaking to groups of parents, educators, and caregivers. Some of the reasons these questions arise, as mentioned above, are media portrayals and news coverage of autism. Examples include: Television shows with gifted characters either identified with or assumed to have autistic traits: Alphas, Big Bang Theory, Bones, Rizzoli and Isles, Touch, and others. Some would include She…
Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations.
I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands.
What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks.
How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference.
Demand that your charities seek out the broadest possible array of advisers and board members.…
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