When an “official” Asperger’s / autism diagnosis is just a formality

I’ve been meaning to write this post for a long time.  I finally had the time and energy today…

Sometimes, there are things you just know.  This holds true for my Aspie-spot-on-the-spectrum.

But, please let me be perfectly clear: I did not arrive at that conclusion lightly or casually in any form or fashion.

Nope, I swallowed a microscope.  I examined myself as critically, objectively, and honestly as I could.

I’ve written before about how I came to suspect that I might be on the spectrum.  What I didn’t discuss in depth in those posts was the torrent of investigation I was conducting on the sidelines.

In that post (that I linked to above), I wrote about how I took multiple questionnaires, being as honest and candid with myself as possible, even when I was ashamed to admit certain socially-incorrect characteristics, and thinking far back into my childhood, even when it was uncomfortable–and often painful–to do so…

In that same post, I wrote about how I checked myself against multiple checklists…

Also in that same post, I wrote about how I’ve been brought to tears while reading firsthand accounts of the Asperger’s experience, written by numerous ActuallyAutistic bloggers…

…and all that.

But when I wrote the previous blog posts and Twitter tweets, I have so far remained within the Realm Of The Big Picture, sharing only occasional snippets and screenshots of data along the way.

Now, I’m going to give numbers.  Lots of numbers.  I’m going to gather all of those screenshots into one place.  I’m also going to elaborate on specific examples and experiences.  I’m even going to link to official sources, as well as those of other leading contemporary experts.

In short, I’m putting my money where my mouth is (a saying, by the way, that took me forever to grasp, but once I “got” it, it became quite useful to me).

The following data/information will be organized according to the framework of the United States’ CDC (Centers for Disease Control) official diagnostic criteria; this will serve as my overall/general outline for the duration of the post.

(Note: this post may get unexpectedly long, as has happened in the past, and if it does, I’ll post multiple parts.)

OK…(deep breath)…starting from the top:

The first screenshot is the first of five US CDC diagnostic criteria for autism.  All three sub-points must be present in order to meet this portion of the criteria.  It is, however, important to note that the examples listed in the criteria are simply examples (the CDC itself admits that the list is “not exhaustive”, and these often manifest differently in different people, and may initially be difficult to identify/recognize in–or apply to–real life).

CDC ASD Criteria A

Now let’s pick apart this portion and see how it applies to my case.  I’ll explore this systematically, starting with #1.  While I do not have a “reduced sharing of interests” (in fact, I love to share my interests, albeit with a very limited number of people in real life, or with a greater number of people online only), other examples are obvious to me.

The most applicable example mentioned here is the “failure of normal back-and-forth conversation”; in fact, I often find myself realizing–only after at least an hour–that I’ve dominated the conversation for a long time, and becoming self-conscious and/or embarrassed about it.  I think I respond to social interactions OK, but the initiation of social interaction is not as likely to happen.

Moving on to #2…I’m not sure what they mean by “‘poorly integrated’ verbal and nonverbal communication”, so I can’t–and won’t–speak to that.  Eye contact, however, has always been extremely uncomfortable for me; I’ve written about this before in greater detail.

The third bullet-point is the real kicker for me.  I do have friends, but they are few and far between; it’s definitely a case of “quality over quantity”.  In a few special cases, these friendships and relationships have lasted many years (my four great friends I’ve known for 26 years, 25 years, and for the other two, 5 years).  In many other (unfortunate) cases, I’ve lost contact with friends, for one reason or another.

I can adjust my behavior–to an extent–to fit different social environments.  Hanging out with those close friends (always only one or two at a time) is different than meeting with clientele in my professional office.  When I’m feeling particularly resilient and fully-battery-charged, I might even take on some chameleon-like skills…but increasingly, I prefer not to have to.

Imaginative play had always been frustrating for me as a child; nobody else could “do it right”, and everyone else was too complicated and seemed intent on wasting time by making Barbie get dressed, walk up and down the stairs of her Glamour Home, or get into her car with Ken (during the eye-blink time-frame in which I actually played with Barbie dolls).  Imaginative play by myself was easier, but adding anyone else–even a friend–to the mix only complicated everything.

The absence of interest in peers is definitely strong.  Even today, I don’t have many friends my age.  Of the four close friends I mentioned earlier, only one is in my age group; another is nearly 36 years older than I, and the other two are 19 years older.  I wouldn’t mind hanging out with someone younger than I am.  But people my own age vex me; I can’t seem to “get it”, and up until recently, I had never understood why.

The “lack of empathy” so often associated with Asperger’s/autism does not actually specifically appear in the CDC diagnostic criteria; however, since the trait is mentioned so often, I took the Empathy Quotient Questionnaire.  The picture below is a screenshot of my results; I’ve taken this questionnaire a total of three times, scoring from 16-22, so this was a fair average.

Empathy (EQ) Score (feeling nice)

OK, since we nailed Part A of these diagnostic criteria, let’s proceed to Part B.  At least two of the four sub-points have to be present in order to qualify for diagnosis.  Here’s the screenshot of this section:

CDC ASD Criteria B

As above, I’ve pretty much knocked this one out of the park, too.  I may not have “stereotyped or repetitive motor movements”, as the first sub-point claims…or maybe I do.  I did bite my fingernails for ten years.  Then I chewed on the inside of my mouth, often until it formed open sores.  Then I picked at the split-ends of my hair.  Now there’s a callous in the center of my right palm, which developed when I unconsciously started digging at it with my left-hand fingernails–an activity I’ve subconsciously engaged in under the conference table when meeting with people in a moderate-pressure situation, until I catch myself.  All of these have overlapped throughout the years.

I may not line up my toys or objects anymore, but I do systemize quite well.  Check out my Systemising Quotient score!  Lol.

Systemizing (SQ) Score

The Systemising Quotient test compares how analytical/systematic one’s thought processes are, to those of the rest of the population.  To put the numbers in perspective, the difference between male and female non-autistic people was a whole 7.5 points (and society is hung up on the idea that males and females are soooo different).

The difference between the different categories of females ranged from 11.9 points (the difference between non-autistic and suspected autistic females) to 14.7 points (the difference between non-autistic and known autistic females).

The higher the score, the more analytical/systematic your brain works.  The highest-scoring group were the males with suspected autism, at 81 points.  My score (which is similar to the scores of a few other Aspie/autistic people I know, some of whom have received official diagnoses), are 36 points above that.

At first, I didn’t think #2 applied at all; after all, I like variety in food/dietary intake, music, movies and TV shows, reading material, general subject matter, cultures, and other categories.  I often get tired of the same old thing, and become impatient in my desire to do/eat/read/watch/listen to something different.

But then I started thinking more deeply.  I have my daily routine.  Most people do, so there’s no obvious difference there….until that routine becomes disturbed or abruptly changed.  My emotional response to such a change is quite exaggerated, bordering on the irrational.  At first, I scolded myself and tried to convince myself that it a change in my schedule was no big deal, I can fit an additional task in, or conversely, I can find something else to do if one of my activities was not going to come to fruition that day.

But I couldn’t let go of the fact that the disruption knocked me off-kilter and left me confused and cognitively unstable.  It wasn’t as simple as just “adjusting to it” or “letting it roll off”.  That appeared to come easily to everyone else, but not me.

The third point mentions “highly-restricted” interests; my interests aren’t necessarily highly-restricted, but my more intense areas of focus (i.e. “special interests”) are.  I have some of what I’ll call “primary interests” and some of what I’ll call “peripheral interests”.  (Damn, I like those words!  They work 🙂 )  My primary interests are highly detailed and I know them fairly in-depth, and I always find them interesting and anxiety-reducing.  They serve as outlets for me.  My peripheral interests have the same positive effect on my wellbeing, but I don’t spend as much time engaged in them, nor am I as knowledgeable about them.  I do tend to become fixated on certain subjects, and can go for hours without “coming up for air” when exploring or engaging in them.

Sensory sensitivity, the fourth sub-point, is definitely present, and not only am I extremely sensitive to many types of stimuli, but being subjected to such stimuli also often results in a neurological overload that manifests as an outward behavioral response.

I can–easily and rapidly–become very irritated in the face of unpleasant or persistent stimuli.  I can get too hot or too cold very quickly; I start to get very restless when I feel damp, humid, or stagnant; I absolutely cannot stand the feeling of water drops hitting me; smelly trash, whether in the house or in a dumpster outside, is incredibly disgusting to me; I can smell perfume from across the parking lot, even if the wind isn’t blowing.  I’m an emetophobe and always have been.

LED and fluorescent lights are a complete no-go, and intense blue light–no matter how beautiful the color–has given me a rip-roaring migraine within an hour.  I didn’t wear jeans until I was 10, because I didn’t like how they (failed to) fit on my body, and I can’t stand percale sheets or jackets without inner lining made of soft cloth on the inside.  And leather furniture or car seats are completely out of the question.  I can’t even stand some foods, due to their texture and my overactive gag reflex; case in point, mashed potatoes.

Parts C, D, and E of the CDC diagnostic criteria can be shown together fairly easily.  Here is the screenshot of those criteria:

CDC ASD Criteria C, D, E

Part C is entirely true for me, word-for-word.  I’ve written before about my own early childhood (the “early developmental period” the criteria refer to), and the difficult social interactions and the unusual collections (rocks were mentioned, but I might have forgotten about my other collections – feathers, and anything having to do with rainbows), and whatnot.

Part D really spoke to me as well, since this has always caused problems throughout my life.  I’ve always had difficulty making friends.  I always suffered bullying and/or criticism.  At work, I’ve had to enact rigid schedule procedures to minimize the anxiety brought about by the prospect of having to meet with people (especially those off the spectrum) whom I don’t know well.

Given the specifics I mentioned regarding academic development, I’m pretty sure Part E is satisfied, too: there’s no intellectual impairment.

Some screenshots of questionnaire results…

The first “quiz” I took was the Asperger’s Quotient test.  According to a decent article in Wired,  it was developed by none other than Simon Baren-Cohen (like him or not; I know that I don’t agree with everything he says, but he’s part of Cambridge’s Autism Research Centre, which is well-respected among official circles).  The questionnaire scores range from 0-50; the higher the score, the more likely one belongs on the Asperger’s/autism spectrum.  According to the Wired article, the average score among the “control” group (read: allistic/nonautistic) is 16.4.  I’ve taken this test several times throughout the past five months, always scoring well into the 40s, my scores ranging from 43-48.  This screenshot represents a fair average:

AQ (50 question) Results

Not satisfied with just one “quiz”, however, I dug deeper, and found people talking about this “rDOS” thing and comparing these cryptic-looking diagrams.  I gave it a whirl, and came up with the following screenshots:

rDOS results 2

rDOS graph 2

The rDOS test even gives you an 11-page downloadable-and-printable PDF file that goes into great detail about each category, each question, and how your specific answers compare to other Aspie/autistic people and allistic/nonautistic people.  This PDF is available for free, but only for one hour.  Obviously, I saved mine.

Wanting more detail yet, I probed further.  I was impressed with DealWithAutism.com’s available tests, because they have different versions for young children, adolescents, and adults.  A link to the adult version can be found here.  My results from that test are shown below:

DealWithAutism dot com Asperger's quiz-2016-05-04

The picture is a bit blurry, so I’ll summarize.  There are 1000 points possible; again, with this test, the higher the numerical result, the more likely one is to be on the spectrum.  For scores 600 and below, there’s no sign of autism.  From 610-770, it depends on where you sit within the range; the higher the number, the more likely Asperger’s/autism is.  From 780 on up, it’s a done deal; you’re Aspie/autistic.  For the record, my score was 925. 🙂

I stumbled on the RAADS-R test fairly recently (links to AspieTests.org), and decided to go ahead and take it, just for “gee-wiz”.  Here again, the higher the numbers, the more neurodivergent one is likely to be.  There’s no fun diagram with this test like there is with the rDOS, but this test is helpful in that, like the rDOS, it has several specific categories.  Here’s how I came out: (again, way out there)

RAADS-R test

In summary, as you can probably see, this post is pretty much the aggregation of information and self-assessment that I’m referring to when I make the claim that 1) I’m an Aspie, and 2) I feel fairly comfortable with–and solid in–saying that.  I feel I’m pretty legit as I am.

These results, along with the fact that I’m thankfully not in urgent need of additional support, may also explain why I’m personally in no immediate hurry to get an “official” diagnosis.  (However, there’ll probably be a shorter(!) Part 2, in which I’ll explain why the Asperger’s self-diagnosis is indeed Asperger’s and not other similar-looking classifications/disorders, complete with screenshots of other online self-assessment results.)

I will admit, however, that this approach may not work for everyone.  It seems to work for me because I’m fairly introspective, self-reflective, self-knowledgeable, and self-analytical.  I’m honest with myself, even about traits that might not be flattering (in the conventional sense of the word).

All of the above being said, I “Never Say Never”; I’m still considering undergoing a professional evaluation.  I simply have to tread very carefully if I choose to proceed, because in the US, I might have nothing to gain…but potentially everything to lose.  So, we’ll see. 🙂

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14 Comments

  1. I totally identify with what you say about friends being quality over quantity. I’m lucky I’ve got friends but I don’t make new ones easily so the ones I’ve got are very special. They are people who can see past first impressions and got to know the real me.

    Liked by 1 person

  2. My RAADS-R was lower than yours, I think 170ish and it was used as a part of my diagnosis, all of your ‘scores’ are more Aspie than me and I “officially” (eyes rolling at the use of that word) am 😊

    Liked by 1 person

    1. I’m (again) sooo happy for you! I imagine it must bring you the definitive “closure/verdict”; that’s so awesome 🙂

      So they used your RAADS-R? That’s really cool.

      Would you mind letting me know who evaluated you? I’d love to know more. If you like, you can DM me on Twitter or email me at 4thconsciousness at gmail dot com. 🙂

      Thank you, both for your comment and your support! ❤

      Liked by 1 person

      1. Thanks ☺️ Hmm well it’s given me a verdict, and now a whole lot more questions I have to work through lol it’s all so new still 😬, it’s been an up and down few weeks TBH!

        Tania Marshall assessed me 😊 I’m pretty sure she said she uses it to look at ‘themes’ common with Aspie women – I think. But I definitely had to do that test and email her the result 😊 happy to answer any questions if I can 😊 xx

        Liked by 1 person

      2. Thank you very much! 🙂 :). I hope everything “evens out” for you and all is calm, all is bright soon ❤

        Liked by 1 person

  3. I’m with you on the yeah, I know I’m Autistic already and is it worth getting the diagnosis (and my scores are not too much different than yours, too!)? Some days, I want to see it as a magic ticket, like it will open doors that remain unclosed, you know? But I’ve been a lot more content when I realize that fully walking the walk of being in the social model camp means that I don’t HAVE to ever diagnose. And really, what’s to gain by being diagnosed after 40? My husband and son have the paperwork and they have much more typical-seeming Autism and the only thing it did for my son was get him kicked from Catholic school and into homeschooling (I guess that was a good thing). I have girl-Autism and we know how hard that is for people to BELIEVE IN, let alone spot unless we tell them to look for it (and even then, the stories!). I know, in the future, someone will say I’m not a real Autistic without the test and all that special snowflake mumbo-jumbo, but really, I really think if more of us say that we WON’T play their little reindeer games about needing to go to doctors for “approval” to be Autistic and that our real, lived experiences count for something, it’ll be easier for us (over time) to be recognized as a culture. Honestly, I thank the Deaf community every day for fighting a whole bunch of this “yes, people, we ARE a culture” battle for us, and bloggers like you who put it out there: we can fight for everyone’s right to diagnose, but we don’t HAVE to if we don’t wanna. Thanks for this piece!

    Liked by 1 person

    1. Thank you! It was my pleasure to write it 🙂

      I agree with all that you said. I’m short on time but especially the part about reindeer games because that’s often how it goes 🙂

      Liked by 1 person

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