Friday, July 8, 2011

Book Excerpt: The Autism Assessment, Part 1

If you have wondered what a formal evaluation for autism is like, now you can read one. From my current book project, this my reflection on the formal assessment I received in 2006. The assessment is eleven pages, so there will be several posts including my comments.

A reminder that my overview of social connections and the autistic experience, A Spectrum of Relationships, is available on Amazon's Kindle store and the BN.com Nook store. What follows below is from my next project.

On Monday, December 4, 2006, my wife and I returned to the psychologists’ offices for the results of my assessment. My wife was already certain of the assessment results, while I was unsure of what to hope for. If something was “wrong” with me, would it be something horrible? If nothing was “wrong” then did that imply a different issue? It would be as disconcerting to have nothing diagnosed as to have something diagnosed. 
We were led into the lead psychologist’s office. Near her desk, relaxing in a small carrier, was a little white dog. I wanted to free the dog, but didn’t say anything. My wife and I sat down and the psychologist opened a folder with two copies of my assessment. The psychologist handed me one of the reports and then jotted some notes on a pad. She told us she was going to explain some concerns the evaluation raised, particularly issues related to my studies at the university. 
Whenever we’re in a bookstore, I’ll inevitably catch my wife reading the last few pages of a novel. I can’t stand the thought of reading the ending before the beginning of a story. A neuropsychiatric assessment is different, though. Of course I turned to the last page to read the conclusion. My wife was right and the results were exactly as she expected:
With respect to high-functioning autism, S. displays a number of salient characteristics.
The cynical me suspected it wasn’t a surprise that the neuropsychologists recommended by the university determined I am a high-functioning autistic adult. Part of me suspects mental health and medical experts have to find something to diagnose; the slightly less cynical me has to consider the likelihood that there is probably some truth in the diagnosis. 
There is something strange about reading a psychological assessment of yourself. It must be something like an out-of-body experience, though I’ve never had one of those. Part of you wants to deny it all, while you can’t help but occasionally say, “Wow, that’s just like me!” I feel the same way when I read a fortune cookie — sometimes silly sayings inside cookies can be right. I held the report in my hands, looking at it while the psychologist spoke. I wanted to play with the cute little dog and ignore the words being spoken. Of course, ignoring words is a special gift I possess. The dog was adorable. 
The report, which my wife has since filed in a safe place, is labeled “COGNITIVE NEUROPSYCHOLOGICAL ASSESSMENT” in all capital, bold type. Beneath the title are my name and the dates November 6 and 13, 2006. There are eleven pages in the folder, written in less than captivating prose. Business contracts are more compelling. At the bottom of the first page I read a single-sentence summary of what other psychologists and psychiatrists had included in my health records:
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.
Obviously these previous diagnoses were not in chronological order or “mental retardation” would have appeared first. Though I knew the story of my birth, seeing the word “retardation” in a report was a tad disturbing. Some of the comments I had not actually read or heard before, despite providing copies of some previous assessment notes from my own filing cabinet. Sure enough, a psychologist had written “OCD” on the back of a form. How could I be OCD if I didn’t read these notes when they were handed to me the first time? Wouldn’t a compulsive person have read every report at least once?
The last two items were why I endured the testing process. My research had taught me that Asperger’s Syndrome was an autism spectrum disorder. Some clinicians delineate AS from HFA and some do not. I didn’t like the sound of either. Wasn’t autism only slightly better than retardation? At the time, I would have rather been diagnosed with ADHD or even OCD than labeled autistic. I admitted in the introduction that my biases were from media depictions of rocking children, pounding their heads against walls. I couldn’t be like that. Worse, I had read that autism wasn’t something treated easily with a pill and a color-coded day planner. Autism is a scary word, like cancer or cauliflower. 
I experienced hope and dread simultaneously. If I was bipolar, it might explain my bursts of creativity. Was that better than autism? What sort of label was going to follow me through the remainder of life? Should it even matter to me? I thought about not reading any further. 
“Autism,” was mentioned by one of the women, either my wife or the psychologist, and I tried to tune in a bit more. I looked and the psychologist and then at the report. My wife was paying significantly more attention to the words being spoken. I was too anxious to think clearly, much less listen well. 
I read the report several times that night. I also made a copy and highlighted sections of the assessment for the Disability Services representative at the University of Minnesota. I did a poor job highlighting sentences, reminding me that a straight line is difficult to freehand. I decided it would be easier to make dots and lines in the margins to indicate what was important. I must have wasted 20 minutes or more developing a marking strategy. “Not OCD,” the doctor had noted. Was the doctor certain of this? I couldn’t highlight a page without frustration.
Personally, S. 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. 
Intense anxiety? Check. My anxiety increased while reading the report. As a response to the stress, the teacher and writer in me wanted to edit the paragraphs so the content would flow better. The author, I assume the junior psychologist or the receptionist, jumped from topic to topic, which why this exploration of the assessment also flows poorly. Some genres, including most academic writing, aren’t as readable as they should be. Yes, I spent a fair amount of time critiquing the document. 
This paragraph as a list of traits meant to support the diagnosis. Ignoring the writing style, the analysis was reasonably accurate about group settings. I do not like working in groups and do not like social settings. But self-deprecating? Me? I always assumed I was being honest about my failings, which are many. Thankfully, people interpret frankness as a dry wit. I don’t mind being considered witty. 
By the middle of the second page I realized traditional “paragraphs” were not part of the assessment genre. I had an epiphany when I realized this document was similar to group projects my students submitted in class. The assessment report was two stream of consciousness works, dictated by the two psychologists and sloppily merged. I needed to let go of my editing impulse and read the document in chunks of sentences. This was nothing like reading a student essay; it was like reading a badly written corporate manual. I thought about cutting and pasting the document in a word processor, forcing the document into a more coherent order. Why not put everything academic in one section, for example? But, this was the document I had to decipher. 
Now that you know my internal thought process as I read the document, I am going to step through the assessment’s contents. Don’t blame me for the seemingly random order of the psychologists’ observations. After all, the psychologists recognized my need for order and routines. 
Transitions are problematic for him, and he does best with routine. 
Moving from California to Minnesota was more difficult than I had expected. Bad experiences at the university made the transition more challenging. I tried to tell myself that the move had been fine during the summer, but my wife reminded me that it wasn’t. I missed my routines, from specific radio programs to television shows airing at the “right” time, not the odd Central Time hour early broadcasters used. I missed familiar landmarks, too. Change was not easy. Having lived in Minnesota for five years, I can attest that I did not acclimate to life in the Twin Cities.  
He can be somewhat obsessive, especially with computer-based tasks, displaying some perseveration. 
In psychology, perseveration is continuing to respond to a situation or external stimuli long after the trigger event has ended. I’m assuming computer “situations” are the all-too-common hardware and software glitches we experience. I describe my approach to such situations as persistence. Isn’t that a good thing? I hate to give up, especially when my computer has a problem. I’ll spend all night trying to fix something on the computer, be it a hardware or software issue. The computer gremlin has to be defeated! Since switching to Macs, I don’t have as many opportunities to deal with software problems… but I did have to deal with a dead hard drive shortly after starting classes at Minnesota. Not much of a mystery or challenge. Replace the drive and you’re done, especially if you keep as many backups as my wife and I do. 
Stress leads to more than perseveration; it leads to migraines and memory lapses. 
Apparently, seizures affect short- and long-term memory skills. Of course, stress exacerbates symptomatology. 
I’ll be the first to admit that my memory has gaping holes. Under stress, I can’t recall my birth date. That’s not an exaggeration. I’ve been stumped by requests for basic information that for other people is deeply ingrained and immediately retrievable. Try being fixated on solving something, without remembering what started the chain of events or what the original problem to be solved is. I’ll be doing something diligently on the computer, and suddenly pause to remember why I’m performing the task.
Expending a lot of energy on a potentially pointless task is something I do too frequently. I don’t believe it is because I have the energy, so much as I lack the energy and discipline to stop doing something. Stopping takes more energy than continuing a task via mental inertia. 
S. attests to an extremely high level of mental energy. 
It’s either a high level of energy or insomnia. Is there a difference? When I cannot sleep, I might as well be working. Sometimes, I do sit and watch bad movies at 2 a.m., but more often I find myself writing, reading, or planning some grand project. My websites and blogs are products of many late night hours. Skipping ahead in the written assessment, the psychologists reference those long restless nights when I am most likely to experience the compulsion to write. 
At times, S. 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.”
Because I can visualize complete stories in my mind, you might assume it would be easy for me to write them onto paper or disk. Words are not pictures, though, and sorting through a visual version to write a good story requires effort. Sometimes, I’ve managed to do that with minimal effort. I have sat down at my desk overnight and composed a complete play. But most of the time I think of the story and do nothing with it. I could tell the complete story to someone at the moment I see it, but I usually let it go away.
When I see a story, it is exactly like a movie. Initially, I don’t hear any dialogue, I only see the action. The result is that I can write descriptions of the scenes before I can write the dialogue. When I do hear words, it’s as if the characters are real, but on camera. Some writers hear the inner thoughts of characters — I have to add those later and always feel like I’m “making up” the thoughts, since you can never be certain what someone is thinking. I’ve visualized myself sitting at a coffee shop interviewing a character.
I never know what I am going to write. I see it, hear it, write it. The stories seem as real to me as any other memories. Because I keep the stories around me, often with multiple copies each in a different location, they probably outlast genuine memories. 
With increasing apprehension, he has learned self-calming techniques. Logical thinking skills are highly valued by S., 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. 
The way I usually cope with stress is to run and hide. I’m not sure that’s the best technique in the world, but it does help me. When people aren’t being logical, that’s when I’m most anxious. I’ll abruptly leave a situation I perceive as illogical or disorganized. My primary goal is to avoid a complete mental meltdown or an angry outburst. I have no tolerance for ignorance or incompetence. It is best for me to walk away and listen to some quiet music with my head buried under anything that blocks the light. I can’t explain why I need darkness and calming music, but those things seem to help me cope with anxiety.  
The opposite of my creative periods are periods of nothing. I don’t get writer’s block, since I can always produce on deadline. I get the sense that I did something but can’t remember what. I’ll spend hours wondering what I was last doing and why. Try as I might to focus on homework, I get bored. Unfortunately, I also get bored in class. The psychologists wrote:
With many academic pursuits, S. is easily bored, frequently working ahead. He has problems with fine motor pursuits and directionality. Timed testing became problematic for him secondary to boredom, and behaviors ranged from impulsivity to obsessive answer checking. For the most part, S. has had low tolerance for the illogic and unscientific.
Boredom is definitely a problem. I was assigned “independent study” in elementary school, high school, and during my master’s degree, and once during my doctorate seminars because teachers didn’t know what to do with me. I have no idea why this trait would be grouped with my lack of fine motor skills in the diagnostic assessment. Maybe the connection is with timed tests, especially the sort with little “bubbles” to fill-in with a number two pencil. After all, I don’t simply check the answers — I check the neatness of the bubbles. 
Again the psychologists emphasize my lack of tolerance for the illogical and unscientific. I’m not one for myths, subjective opinion in grading, or superstitions. How can I teach English? I admit grading poses a problem for me, so I do emphasize grammar and mechanics. Grading student poetry would be difficult, since such grading is inherently subjective. One subject I have taught several times is academic composition: organization, logical reasoning, factual research, and so forth. No teacher can avoid bias, but we can do our best. As a student, I know what it is like to be evaluated on stylistic choices instead of content.  

3 comments:

  1. An adult diagnosis isn't complete without parental reports. When dealing with an adult that is high functioning (meaning they can carry on a conversation), its clinical practice to interview the parents. If the parents aren't accessible, then there can be no diagnosis. Self assessments aren't enough. Your diagnosis would be invalid at Yale, Duke, and UNC Chapel Hill. That is my experience.

    On another note, this isn't an autism assessment, at least not one that would be recognized by clinical standards nor is it an autism assessment that would be appropriate for a child which is an entirely different set of parameters used.

    These type of assessments are based on observation of a patient that comes in to see a shrink. Those can be easily faked and only someone with the highest functioning status would be able to avail themselves of a psychiatrists services.

    ReplyDelete
  2. The assessment I am posting excerpts from, with comments, runs 11 single-spaced pages, excluding the various charts and tables of instrument results. Also, this was meant to affirm existing, lifelong, histories and was not a new or complete assessment.

    It was not an assessment I chose to have, nor one I would have sought. The university set the conditions and provided the list of approved clinicians. I write in the text I think the process is and was deeply flawed.

    ReplyDelete
  3. There is also a reason this blog entry is "Part 1." I did not post the chapter that describes the evaluation instruments used by the clinicians for this assessment. I'm not posting the entire book to the blog.

    ReplyDelete

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