Recently, due to participating in a research study, I was asked to get a copy of the psychological evaluation that told me I was autistic. I did so, and summarily read it. I can't remember if this is the first time I've read it, or if I had a copy ever. But it's certainly the first time in quite a while that I've read it, so it was interesting... and depressing, reading.
The place that did the evaluation is a local one, with various therapeutic programs in addition to their diagnostic services. I wasn't over-impressed with their offerings at the time, and my insurance wouldn't have covered them anyway, so I never got too involved with the organization. I have no idea if that was a good decision on my part or not. But all the same, I do at least finally have a date on which I got my autism diagnosis. It turns out I was almost 20 and a half when I got my diagnosis, right on the tail end of my sophomore year of college. Near finals week. No wonder I don't remember it very well.
It's worth noting, before I begin, that I was diagnosed under the DSM-IV-R, or the revised version of the 4th edition of the American Psychological Association's diagnostic manual. At the time of this writing, the most current DSM is the 5th edition, wherein Asperger's Syndrome only exists as a different name for ASD, or Autistic Spectrum Disorder. Also known as "autism." I now choose to identify as "autistic," because of this diagnostic change, and because while I speak, live independently, and present as fairly normal, I share some of the same difficulties as a nonspeaking, dependent, poorly-blending autistic person. Also, by putting a human face on the condition as a whole, it becomes harder for people to treat nonverbal, poorly speaking, dependent autistic people as... less than people. And there's already quite enough abuse of disabled people to go around.
The First Page and the Interview
The first page of the report involves demographics, including some unusual and probably unnecessary information. Date of birth, name, education, and medications, naturally. But they also wanted to know where I was living, any eyewear I happened to need, and which hand is my dominant one. I have a bachelor's degree in psychology, and I really have no idea why those last three pieces of information are relevant.
I remember being mentally exhausted after the test, and looking back at the list of tests and the number of hours billed, I can kind of see why. The testing process took a minimum of 4 hours, possibly 5. The psychologist began by interviewing me, which included getting everything from my birth weight to any surgeries, allergies, family history, and my particular descriptions of my personal oddities. While she was getting all this information, she was also observing what I said and how I said it. Which is how you get sentences like, "From the initial interview throughout the assessment process, it was noted that Ms. Frisch does have some unusual intonation and patterns of speaking. She presents as being very factual and concrete, but often tells stories that are somewhat unusual in that they are more detail focused or seem to be slightly 'off center' of the main topic of conversation."
As an aside on that second sentence, my brain references things by associated things, rather than in chronological order or some other more pragmatic system. So if I was trying to remember a particular dog species, I'd need to flip mentally through my concepts of similar dog breeds until I found the one I was looking for, or try to remember another dog I knew that looked like the one I was trying to remember. This associational pattern of organization can lend itself to that slightly "off center" kind of comment... but in all honesty, this psychologist is the only one to ever complain about it. And in truth, I'm not the only one I know that does this, and I find it simply moves the conversation along. So I don't find it all that bothersome. I am not, after all, an encyclopedia.
There was also this comment: "While she attempts to engage readily in conversation and is able to be reciprocal back and forth, she sometimes will take the conversation to an unusual level that may reflect intellectual knowledge, but may also be reflective of some of the social dynamics of Asperger's." I've included this sentence exactly as written, awkward grammar and all, because it's always nice to know that even doctors need to have a human eye check over their work. As for my conversational skills, I find that the more enlightened and accepting people I speak with find my particular tendencies interesting, rather than detrimental. Exploring a subject in detail, or from an unusual angle, rather than skimming over it lightly, is an educational exercise.
This section gets the summary: "Her overall presentation, tone of voice, being more monotone, and difficulty with eye contact are also consistent with a typical Asperger's presentation." It's worth noting that some autistic people actually go the exact opposite way in terms of voice tones, to the point of sounding "sing-song," or even cartoonish. I'm actually familiar with one such autistic person, and the end result is probably just as confusing as my semi-monotone voice was. I think my vocal variance has probably improved somewhat in the 9 years since this evaluation was done, but I guess I'd have to go back to find out.
So Many Tests
After the interview, the tests began. There were... so many. (The paper says there were only six, but on average, each took 45 minutes, minimum... so it added up fast.) One came after the next, too, with almost no breaks. I think I remember calling for a break after my bladder filled up so much I couldn't see getting through another test... and when I got up, my legs felt stiff and tired from all the sitting.
At the time, I found the experience fascinating... at least until I got tired, so I took notes about the tests in my downtime between tests. I took them on my puzzle book, which I still have because I'm only occasionally interested in word search puzzles.
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| You can also see how frazzled I was overall by how disordered my self-explanation of the tests is... |
I am not 100% sure which tests came first, even with my notes here... but we have to start somewhere, so we'll start with the Rey-Osterreith Figure Drawing. I linked the complete figure in an earlier post regarding visual processing difficulties, but I'll post it here again.
Rey-Osterreith Figure Drawing
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| This is overly complicated on purpose. |
If you compare my drawing in the picture above with this figure, you can kind of start to see how markedly different my visual processing is from the average person's. The average person, you see, recognizes that this figure is an overly complicated box with a fin on top and a triangle on the right side, at its heart. They then fill in as many details as they can remember.
My drawing can tell you that I entirely missed that, and instead drew a series of triangles and small boxes, with some of the finer details noted but not necessarily in their correct places. The report notes, "Her approach was to start at the top and work her way down rather than conceptualizing the outer gestalt." (I should note that I drew this version after my official test results had been recorded.) The figure is made purposely overly complex so that nobody but a savant would remember and be able to reproduce the full shape and details perfectly, by the way. Still, "As a result, her overall drawing was impaired compared to similar adults and does suggest difficulty with complex visual assessment." I can't stress enough how true that last bit is. Most visually complex art is wasted on me.
The tests were drawn from a larger collection of tests called the Delis-Kaplan Executive Function System. Specifically, my notes and the report say I did the Color-Word Interference Test, followed by the Trail-Making Test, followed by the Tower Test.
Color-Word Interference Test
The Color-Word Interference test is a variation on the Stroop effect. Which is to say, they timed how quickly I could identify colors as shown to me on cards ( █ ), then how quickly I could read the words of colors (blue), and then how quickly I could read the color of the text that spelled out a different color's name (orange). The correct answer for all these examples is "blue" but it's harder for a person to read the color of a word, rather than the text of the word. Now imagine doing that when presented with tons of these:
Apparently I only made two mistakes, but those mistakes knocked my score down below average for my age. Meh.
Trail-Making Test
The Trail-Making Test is a test of following a sequence while adhering to rules. You're given a page with the letters A-M and numbers 1-13 on it, and are then told to draw lines from 1 to A, then A to 2, then 2 to B, all the way through the page, without crossing your own lines, until you connect 13 and M. Here's an example of someone getting partway through a variation of this test:
My particular test results noted, "...it was difficult for her to draw a straight line. Most of her lines between the items were very shaky, wavy, almost 'bumpy' suggesting that even though she was able to conceptualize the task, her control of the pencil was less than expected for her age." In retrospect, this is particularly funny to me because I already hold the pencil wrong (in four fingers, rather than three). I do, however, have a hand tremor when riled up, so maybe that was the problem. Or maybe it was just that I'm kind of garbage at fine motor control to begin with.
Tower of Hanoi
The Tower Test I remember most because I ended up sitting on my left hand for a good portion of it.
You had a set kind of like this, in different configurations, and were expected to stack the pieces with the smallest on top, expanding to the largest on the bottom. You may only move one piece at a time. This is a test of executive functioning, or your ability to coordinate and plan your actions as well as carry them out. About midway through, though, my interest in trying to solve the puzzle overrode my memory of the "one piece at a time" rule, and I snagged two pieces, intending to move them one after the other. After that was called out as not allowed for the second time, I simply sat on one hand, thus disabling my ability to accidentally violate the rule again.
There were nine of these puzzles, and I scored about average on all of them save the last, which I didn't finish. The test results note that I spent a lot longer trying to finish the puzzle than most people do, which the psychologist charitably explained as, "great perseverance and hard work ethic, even when she is unable to complete something easily."
The psychologist in question didn't know me, so she was mostly unaware that a lot of my life has been marked by difficulty. This puzzle being "not easy" was just another in a long line of challenges, and one with relatively few poor side effects if I didn't succeed. As I recall, I didn't lose interest in trying to figure out the test. The psychologist actually suggested to me that we could move on to another test unless I thought I had the solution in mind.
"Perseverance" is the word my mother uses, and the clinical word the psychologist used. I tend to be more perverse and stick to "stubbornness," personally. It's part a point of pride and part a personal reminder that being persistent is not always a good thing.
TOPS
The next test was more socially-focused, rather than a test of how well my brain worked. The test was a series of interpersonal situations followed by questions about each situation. The contents were mostly problem solving, or "how does this person feel in this situation," or "how does this apply to this other situation?" An example was something along the lines of, "Mary, a 13 year old girl, lives with her father. Her father remarries and the new wife has a 10 year old daughter, who will be coming to live with them. How does Mary feel about sharing a room?"
I should note, before I give my scores, that the TOPS test only scores up to age 17. Why 17? I have no idea. I was almost 20.5 years old when I took the test, too, which makes me wonder if the test results might've been off a bit... but never mind. Cognitively, and in my ability to draw inferences regarding situations, I maxed out the test, scoring at 17 years old. For determining solutions to the situations I was presented, I only scored at 15 years old, and my ability to communicate insights was at 16 years old. Here's the kicker: when interpreting other peoples' perspectives in the given situations, I only scored at 14 years old.
Basically, taking others' perspectives was a lot harder, and understanding emotions and others' emotional responses was difficult. I'd like to think I've improved since then, and... I think I have, but again, without retaking the same test, I couldn't say.
IVA
This is the test that really tired me out. The Integrated Visual and Auditory Continuous Performance Test involved you looking at a computer screen, with big bulky headphones. You needed to click the mouse whenever the correct number (either 1 or 2, it changed) showed on the screen or was pronounced through the headphones. The graphics were very simple, white numbers on a black screen, and the task mind-numbingly boring.
"Mind-numbingly boring" is a particularly apt description, because by the end of it, I really wanted a break and/or to do literally anything else. I recall them asking how I thought I'd done on the test. Somewhat over-optimistically, I said I thought I'd done okay. It turns out my visual score was utterly abysmal. I scored in the lowest 5% on that test, which effectively makes me a dunce on that end of things. At least I scored about average on the auditory part.
MCMI
The last test was more to root out any marked signs of mental illness than anything else. The Millon Clinical Multiaxial Inventory asks a series of kind of obvious (to me) questions about your tendencies and personality type. I tried to answer as honestly as possible, without leaning too hard on the obvious: I felt like I was kind of depressed and overstressed. I'm not sure whether I succeeded in being objective, but regardless, the results came back as "clinically elevated levels of anxiety with depressive features." I was not noted to have major depression at the time (though actually, I would later slide into and out of major depression next year during finals). Nothing else was of serious note, apparently.
Results
Interesting as the tests were to me, the whole point was the results. So, from the report, I was given five diagnoses: Asperger's Syndrome, ADHD, Cognitive Disorder (Not Otherwise Specified, concerns in visual processing and complex visual motor integration), Generalized Anxiety Disorder, and Dysthymia. In more plainspeak: I'm autistic, they think I have mild impulsivity issues, my brain doesn't process what my eyes see very well, everything makes me nervous, and I'm mildly depressed and probably will be for a very long time.
The report ends with a list of recommendations, which include "further testing," "join our therapy sessions," and "maybe get some drugs to help with the anxiety?" The precise wording for the last, which I took exception to, was "Ms. Frisch may wish to speak with her physician regarding possible anti-anxiety medication to 'take the edge off...'" The anti-depressant drugs (note: same drugs as anti-anxiety drugs) tend to be over-prescribed, and the process of finding the correct one can be likened to playing a game of roulette with one's health. Some people get lucky and respond well to the very first one, and others spend months to years suffering from bad side effects from each successive drug. Things like "ballooning weight gain," "complete loss of sex drive," and "worsening symptoms of the original problem," are included.
I recognize that these medications offer many people improved health and welfare, and respect the people that choose to embark on that process despite the drawbacks. Personally? "Taking the edge off" was insufficient reason to throw myself headfirst into that kind of roulette game. Honestly, those four words might be the exact reason I forewent further treatment or analysis at the company at the time.
(The very back of the last page includes raw test results for all the tests above, but as I'm not a trained clinical psychologist with familiarity of all these tests and their scoring, I mostly can't read them or explain what they mean, so they've been excluded from this post.)
