I do not know why it took me so many years to fall out of the tree and consider the possibility that I have a score above the Asperger’s Syndrome (now collapsed into autism) threshold. But in the spring or summer of 2011 I saw an online Asperger’s Quotient Assessment and thought “I should take that.” And I scored 34, which put me two points above the threshold (in other words, I have the score of a high functioning autistic, aka Aspie, or “not a neurotypical“).
I was a self-diagnosed Aspie. And frankly, it was a serious relief. I had a name for my life of experience being different, by which I mean, wondering why everyone else (neurotypicals) seemed to think (given what they said) so curiously. I posted my score on FB, and emailed my parents, my brother, my ex-wife, and my kids. My dad, who loves this sort of self-testing, emailed back that he, too, scored a 34. Somewhere around 15 of my FB friends also took the test and posted their score as a comment, most of whom reported a score above 32. But one friend commented that anybody could get whatever score they wanted to on that test, by which meant that if one had a sense for the characteristics of Aspies it was terribly easy to figure out what to answer to lower or raise your score. He is, of course, correct. So I decided that I should get officially diagnosed.
To my surprise, this proved a bit of a challenge, and frankly it was hardly on the top of my To Do List. So I wasn’t able to secure an appointment until March of this year. I was given the following battery of tests:
Autism Spectrum Quotient (ASQ)
Empathy Quotient (EQ)
Autism Diagnostic Observation Schedule, Module 4 (ADOS)
Ritvo Adult Autism and Asperger’s Disorder Scale (RAADS-R)
My ASQ score was 35 (32+ is considered autistic), but I scored 20 on the EQ, which is a full 10 points below the 30 point threshold. The report did not provide a numeric value for my ADOS Module 4, but concluded that “he exceeded the cutoff for the Social Interaction Total score, but was below the autism spectrum cut-off for Communication and the overall total score.” For the Ritvo I scored 98, and a “RAADS-R score of 65 or greater is consistent with an autism spectrum disorder diagnosis.” I will let you draw your own conclusions, but these scores confirmed my self-identification as an Aspie.
Those of you who know me might be thinking: “But you seem so normal” (for another Aspie’s post on that topic, see here). I have two responses.
1. If I you could experience the unfiltered stream of thoughts that run through my brain you would not say that.
2. I am very dubious that the scales that are used to conceptualize and measure autism will still be in use in 25 years: I do not think it is unidimensional, and that we will come be able to better classify different types of autism in the future.
More specifically, and probably more helpfully, you might be thinking of classic autistic tendencies represented in popular media, such as an absence of eye contact, and thinking that I do not seem like that. Yes. But the issue is that these representations are not terribly representative of everyone who is an Aspie (hence point #2). For example, my self test score on Simon Baron-Cohen’s Reading the Mind in the Eyes test is 29. A score of less than 22 is considered indicative of autism, a score of 22-30 is the normal range, and in Appendix 1 of the book in which he published the test, Baron-Cohen writes “If you scored over 30 you are very accurate at decoding a person’s facial expression around their eyes.” So I am well above average at that task.
Why post all this? The primary reason is so that I can refer to it in later posts. I have this idea of (1) venting about what it can be like interacting with all y’all neurotypicals, and (2) trying to help you neurotypicals make some sense of us Aspies. To that end, here’s my first tip: stand-up comics whose jokes make fun of “normal social behavior” might well be Aspies.
I too am one of those Aspies that get the familiar response ‘But you don’t LOOK like you have Aspergers’ I know it sounds horrible but I want to kill them for being so uneducated on Aspergers to think you have to look a certain way! I’ve spoken with a few that have had similar responses & I blame it on lack of knowledge. I have all my life ‘copied’ friends actions etc to know what’s ‘normal’ but if they saw my mind for one day or even saw me at home alone they would be confused.
It is a very strange thing to have & I feel it really is misunderstood in society.
If you want to share experiences etc feel free to send a comment or email!
All the best, Maria
Thanks for stopping by, Maria. It certainly is misunderstood, and since we are such a small group, that will probably be true for a long time. Being “validated” is something I suspect all human beings desire, and when people (especially friends and family) argue with us about our experience, it is pretty frigging infuriating. I will definitely drop by your blog and visit.
I’m an Autie, and people say similar to the above to me. That’s why I reply, “Now you know why they call it an invisible disability,” if I’m feeling generous. Of course, if I don’t feel generous or I’m simply tired, I just respond, “You don’t look like you only use fifty percent of your intellectual capacity.” YMMV, of course.
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I score 46 and I have been told I am impossible to diagnose as I don’t have anyone alive who knew me as a child. I have been told my traits are neurological disorders rather than Asperger Syndrome or Autism spectrum disorder, but hey, I’ll just keep chugging along anyway 🙂
Matt, finding someone to diagnose an adult turns out to be tough. Better diagnostic tools (for kids and adults) will be developed, but you are the best judge of how to make sense of your experiences, so do keep chugging!
This may be a bit off topic, but did Simon Baron-Cohen’s Reading the Mind in the Eyes test seem a bit…gender biased? I found myself forming an expectation near the end of the test that the eyes I considered to be female would likely represent emotions stereotypically female: compassion, flirtation, empathy…etc. So I went back through the test a second time.
Female eyes received the following associative emotions: 2.) Playful 3.) Desire 6.) Fantasizing 9.) Preoccupied 15.) Contemplative 17.) Doubtful 18.) Decisive 19.) Tentative 21.) Fantasizing 22.) Preoccupied 25.) Interested 27.) Cautious 28.) Interested 29.) Reflective 30.) Flirtatious 31.) Confident 34.) Distrustful 35.) Nervous
While Male Eyes: 1.) Panicked 3.) Upset 4.) Insisting 5.) Worried 7.) Uneasy 8.) Despondent 10.) Cautious 11.) Regretful 12.) Skeptical 13.) Anticipating 14.) Accusing 16.) Thoughtful 20.) Friendly 23.) Defiant 24.) Pensive 26.) Hostile 32.) Serious 33.) Concerned 36.) Suspicious
I’m not really sure WHY I started to form that expectation. Because I’m a male? Because photos of female eyes were all young, while the males were not? Why are there no sexually charged words associated with males, while “playful, desire, fantasizing x2, flirtatious, interestedx2” were all used with female eyes?
My first inclination was to assume this was done intentionally in order to assess whether an individual could decipher, or was aware of, the societal expectation for “normal” (read stereotypical) social behavior based crudely on gender. But if that is the case, doesn’t it speak volumes about the tacit acceptance of such stereotypes?
Maybe I’m over thinking things here, but I couldn’t help but notice the gender differences in the test. Also, I know nothing about autism tests, so if I’m misguided in anyway, do let me know.
Interesting observations, and I would be very surprised if Baron-Cohen and his colleagues have given gender bias, etc. consideration (though I have not read enough of his work to say that he has not). In my opinion, all of the assessments out there are quite crude.
That said, I can imagine a reasonable defense of a sexist test: if society is sexist, and one is trying to distinguish among social skills strongly represented among neurotypicals from social skills poorly represented among neurotypicals, then the ability to “read” sexist social constructions makes sense. This would also be consistent with a conjecture that social crusaders such as abolitionists, suffragettes, civil rights leaders, etc. will be strongly disproportionately drawn from the autistic portion of the distribution of human beings. Some biographies of such people are certainly consistent with such a conjecture.
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Thank you for writing about this “but you seem normal” issue. I think that I seem normal too (just awkward). I took all of those tests on the site that you mentioned and every result indicates that I’m very far from being neurotypical… Well, it could explain why can’t I fit in and don’t know how to manage a conversation.
While I completely understand wanting to know and be diagnosed, if you ARE in fact autistic. Go about being diagnosed the correct way not online and don’t encourage others to take an online test.
I myself, just went through a huge process of finding a specialist outside of my own health care provider, to get accurately diagnosed, because taking a online quiz to tell you if your on the spectrum or not is kind of outlandish. And not even helpful for yourself. If you are in fact on the spectrum, why wouldn’t you want to go to a professional to be properly tested?
Anyone can make those stupid online quizzes. Now that I’ve been diagnosed ASD, I have been referred to services and treatments I would’ve never been told to go to. I can finally get the help I’ve needed. So perhaps you do have ASD and you’re very high functioning but telling people to take an online quiz is a very ignorant thing to do, because a lot of people can have similar traits to people on the spectrum. Maybe you should do some more research before writing blogs of this nature.
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I just took the AQ, the EQ and the RAADS-R and obtained:
RAADS-R: 195 (language: 16, social relatedness: 100, sensory/motor: 46, circumscribed interests: 33).
Ive always felt different from everyone and I know and feel that I have some type of autism. My parents said that I always seemed normal, but I know its not true. Maybe I just adapted to the situations quicker and tried to act normal by observing and everything. As a family we had to move around alot so that might have help alot in coming out of the shell and dealing with the autism; I also play soccer since I can remember, which has also helped alot.
But I like being like this, and people accept me the way I am. Ive never had trouble obtaining what I want (good education and a good job), again I think that is due to how my family raised me. Oh and when I was a kid, I was diagnosed with ADHD and I have mild OCD.
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I am sorry