Eager is the temptation.. humble is the satisfaction.. voracious is the humility.. empowering is the silence..
Diagnosis: from self to formal and test results
I started out the same way most folks do—who were not diagnosed at an early age—I noted the differences between myself and most other folks. I started to look for patterns and comparative reference points. I sought-out empirical testing in any form available. This began the self-diagnosis process. Once I had enough evidence to support my suspicion, I sought formal diagnosis—not because I doubted my suspicion but because I am the type of person who requires affirmation.. concrete proof of concept. Below, is the entire process in chronological order I went through. If you or someone you know is about to go through a formal diagnosis, it may or may not take as long as mine did. My advice: document everything you deem unusual and categorize it. Help the professionals help you.
This page is an overview. For more details click the links, below:
Self-Diagnosis: a step in the right direction
Below, are my actual test results from various online test sources. These do not replace a formal diagnosis by any means, but self-testing most definitely pointed me in the right direction. Me being the way I am—a confirmationist—I require formal documentation and affirmation. Having typed all of this, I will also stress that if you score high on the same/similar tests, there is a strong indication you may have ASD or ADHD or.. and if you’re perfectly fine with that alone, then there is no need to proceed further. If you’re like me, then seek out a psychological testing facility as I did.
|2016 | Nov||– began self-diagnosis/research process|
|2016 | Dec||– began seeing a social worker/counselor who also worked with people with Asperger’s Syndrome in the past|
|2017 | Jan||– referral from primary care physician to nueropsychology testing facility after mentioning a suspicion of a “social disorder of some kind.”
– Submitted initial screening questionnaire.
|2017 | Mar||– 9th – initial interview/consultation (1.5 hrs)
– first test (CPT – Continuous Performance Test) to rule-out ADHD (15 min)
– 22nd – primary interview (6 hrs)
|2017 | Jun||– 16th – formal testing process (6 hrs)
– 20th – testing cont’d/follow-up interview (2 hrs)
|2017 | Jul||– 11th – test results (1.5 hrs)
– 18th – test results cont’d (1.5 hrs)
|2017 | Aug||Official Diagnosis:
Autism Spectrum Disorder – Level 1 – F84.0 (2.5 hrs)Comorbid Diagnosis:
||– 7 months (concurrent)|
||– 4 hours (1 hr sessions)|
||– 20.5 hours|
Yes. I was a bit difficult to figure out, at first. See, I’m an adult, and a typical diagnosis process occurs at very early childhood—typically, some time after first year school starts. It becomes obvious to teachers fairly quickly that a child is displaying (or NOT displaying) certain unusual behaviors around other children, around adults, in unfamiliar environments (e.g. a new school room), during recess, and during any physical activity. Once the child is identified, he/she is typically pegged for various psychological and physical testing by the school. It’s usually during this period that a referral to a more thorough testing facility is done, and that’s when the parents discover that their child is autistic or has ADHD or Tourettes or.. any host of things to explain non-typical behaviour.
For an adult diagnosis, it involves a peeling-back approach and a process of elimination. Other possible disorders must be ruled-out, first. ADHD seems to be the “go to” diagnosis, first-off, because it is quite common, especially in the United States. Another disorder that needs to be eliminated is Schizoid Personality Disorder. Ironically, both ADHD and SPD have several overlaps with ASD/Asperger’s Syndrome. As I was learning this process, I was quite taken-back by how similar SPD (and its subsets) is to ASD.
In short, ADHD was ruled-out for me because I’m greatly impacted by social interaction, and I have numerous repetitive routines/behaviors but don’t lose focus on a specific task (quite the opposite, actually). SPD was ruled-out because I’ve been experiencing my symptoms since early childhood (e.g. I was born this way), and I actually DO make the effort to interact socially, regardless of the anxiety results.
I was fortunate to have an extremely experienced, knowledgeable, and caring neuropsychologist handling my case. He didn’t simply “jump” on the first results that came up but heard and studied my case history. In fact, it was almost a team effort—I provided him with a MULTITUDE of examples. I probably gave him TOO much and overloaded him (like I do with most things), but he had plenty to work with, just the same.
One thing I will share is my frustration at how little information and data there is for ADULTS “on the spectrum.” The bulk of knowledge is shared in a community-oriented format (word-of-mouth, social media, self-help groups, etc.). There is a great deal of information for children. One question that seems to be reoccurring is: what happens when those children who are on the spectrum grow up? It doesn’t leave. It isn’t curable. Depending on the degree of severity, it isn’t fully debilitating, and some of the symptoms/results can be somewhat managed through behavior modification and/or environment modification.
The final thing I would share is, despite the fact that you may be diagnosed, the rest of The World doesn’t really care. People will treat you however they choose to treat you, regardless of your history or diagnosis. It IS incredibly satisfying knowing what you’re dealing with, internally, and it helps you adapt that much more effectively, as a result. For me, I NEEDED 1) confirmation and 2) closure for something I’ve struggled with my entire life.
I know I’m not the only one.
In the previous sections, I explained how I got to this point and why. The formal testing process did NOT include any of the typical online aspergers/asd tests most of us made use of just to get to this point. Ultimately, my diagnosis was a combination of the below personality and intelligence tests and interview/observation. As much data as I’ve supplied on this site—I supplied TRIPLE the amount to my neuropsychologist (poor guy). As I do with most things, I tend to overwhelm people with my special interests—and ASD is certainly one of the most recent. This formal testing process took 6 hours in one day—and I never stopped to take a break of any kind (no water, no food, no restroom, no stretching)—I was hyper-focused and fully intent to complete this. Not only that, I was also having FUN the entire time. I thoroughly enjoyed the experience and particularly loved the visual/pattern portions of the tests.
Here is a precise list of the tests performed (note: scores vary, but the percentiles are in comparison to others who have taken the same tests—so, if you see a result in the 84th percentile, that’s very high up on the list compared to those who have also taken it; 24th percentile is about in the low middle):
This is also a breakdown by classification/category. Neurotypical scores will differ just as those On The Spectrum will differ, but there are typical groupings that folks On The Spectrum tend to share, consistently.
As mentioned earlier, part of the testing also requires differential diagnosis potential—meaning other possible contributors must be ruled-out, first. ADHD is a very common diagnosis (among Neurotypicals and Autistics). Comorbidity of ASD and ADHD is common. I, thankfully, do not have to worry about ADHD. In fact, my hyper-focus is quite the opposite in effect: it takes a great effort to break my focus/concentration on a single thing (much like a cat).
Another segment of testing involves Asperger’s Syndrome. Asperger’s used to be a diagnosis in itself (and is what I would have been diagnosed with prior to 2013 since there was no noticeable delay in speech when I was a child). I’m sure I would have scored even higher than I did when I was a child on the Asperger Syndrome Quotient test had I taken it during my teens. As I’ve progressed through life, I’ve learned numerous coping methods and have learned how to adapt—especially in terms of communication and reading body language (doesn’t mean I’m at the same level of mastery as a Neurotypical person, mind you).
Lastly, there is the intelligence portion of testing (e.g. IQ). I scored <em>above average</em> in terms of intelligence (testing coupled with educational achievement). Again, this is quite typical of those On The Spectrum.
Our intelligence is often overshadowed by our quirkiness, awkwardness, and “blindness” to communication and decorum. Get past that, and you have a very special individual on your team.. a very special and devoted friend/significant other.. and a very original/creative person, altogether.
The results were much as I expected. Also, the results were fairly typical of someone on the spectrum: above average intelligence; high verbal capacity; slower processing speed (due to the over-analytic nature: analyze EVERYTHING FIRST + act SECOND = SLOW RESPONSE); impairments in working memory.
Executive Function: a couple of impairments mostly involving processing reaction time and divided attention. This is not to be confused with ADHD. For me, it’s intense focus (hyper-focus) that slows me down in terms of multi-tasking. It’s much like being a cat. I can INTENSELY focus on one thing at-a-time, and when I do, whatever has my focus is under my microscope/analysis with little else existing around me. Another typical result of being on the spectrum. The Stroop Test and The Trail Making Tests, in particular, threw me “off” because I was adamant about getting that correct—and I bombed it, hard. The other tests (which were essentially audio memory-based) were truly my nemeses. I’ve always known I had a terrible time processing anything spoken to me—which is why I write down what I hear as often as possible (this includes phone conversations, in particular).
Working Memory (auditory) – because I’m HIGHLY visual, my impairment in working memory is auditory. My working memory is like a RAM card in a computer. My rote memory is like a HARD DRIVE in a computer. Where my rote memory has HIGH CAPACITY, my working memory has very LOW CAPACITY. This means I have to write most things I hear down—yet, I can recall entire conversations from childhood with great detail and accuracy—that’s the difference between working memory and rote memory. How does this impact me at Work? Anytime I’m on the phone, I have a pen and paper in front of me, and I write down nearly everything the person on the other end is saying. How does it impact me socially? Someone tells me his/her name while extending their hands (handshaking), I will NOT hear the name at all.. much less remember it. I also believe this working memory impairment DOES impact my inability to recall faces—which, oddly enough, is VISUAL. This one does not make sense to me.
Attention – regarding The CPT (Continuous Performance Test), my accuracy was horrendous, but my reaction speed was “superior.” It’s quite funny to me because it was like a video game, and I was far more interested in clicking ANYTHING that came on the screen than I was in NOT clicking what I wasn’t supposed to. I was extremely fast but inaccurate—not due to loss of attention—but due to impaired processing speed (e.g. it was coming too fast for me to process). Lastly, the CPT was 15 minutes—due to my hyper-focus, it truly felt like it was only 3 or 5 minutes.
Verbal Strengths: again, another typical result of being on the spectrum. Most traditionally-aspie (Aspergers Syndrome) folks on the spectrum tend to have very strong verbal acuity. Since childhood, I spoke like an adult and preferred a “Spock-like” method of delivery and had to manually force myself to alter my method of speech depending on certain people I was speaking to—but, it took me years to figure that compensatory approach out. Interestingly, this has served me well in the workplace when interpreting tech talk to operations talk.
Visual/Pattern Strengths: a couple of superior results. Some folks on the spectrum are audial; some are visual. I’m visual. I can see patterns—even complex ones—and break down the commonalities into more simple categories and sub-categories. Flowcharts, presentations, designs, illustrations, documentation—anything that is visual is within my strength range.
All of the above explains EVERYTHING—every single challenge I was (literally) born with and have learned to either 1) live with or 2) adapt around. The strong points contribute to my analytical and visual approach toward anything I focus on (at Work or at Home); my organizational skills are not impaired and serve me quite well at Work (Project Management, analytics, and documentation, in particular); my compulsiveness toward patterns (mobile or immobile) is also explained. Truly, the reason why Autism Spectrum Disorder is, in fact, a DISORDER is due to the weaknesses—see the symptoms page for a detailed list.
One of my treatment goals is to learn how to condition myself DOWN from a self-stimulating situation—which is almost a CONSTANT. In other words, some folks need to be stimulated UP to keep from being bored; other folks need to be stimulated DOWN to keep from being anxious. I need to be stimulated DOWN to break out of my hyper-focus state-of-mind. I can be so intensely focused on something I like (e.g. special interest) that hours can go by without me noticing—and this can be a problem in my personal life that can hinder me from booking doctor appointments or hearing a neighbor next door or noticing it’s already night time.
Another treatment goal is to learn how to cope with social interaction. In other words, I must learn how to reduce anxiety—which will reduce psychosomatic pain—anytime I’m about to engage in ANY social interaction of any kind. So far, breathing techniques are the primary goal. I never gave meditation much thought in the past, but I never shake off opportunities for improvement.
The eventual goals for interaction WITHOUT anxiety—or, at least, reduced anxiety are:
STAGE ONE: small - medium - large groups STAGE TWO: traveling/trips STAGE THREE: class room environment
I’m quite fortunate that the impacts haven’t been worse on me through the years, and I’ve learned to use my STRENGTHS to compensate for most of my weaknesses. I truly hope these comparisons I’ve shared with you will help you understand what it’s like whether you are or not on the spectrum.