An Identity Crisis and Other Ramblings

*Warning – This post is written with humor.  If it offends, stop reading immediately and find another post.  There are lots of posts on this blog that are humorless.  Seriously.  Stop.  I mean go.  I mean…

My friend, Ib, (thank god she has returned from her various travels as I have felt decidedly “off” while she’s been away) and I were joking yesterday about the identity crisis I am currently undergoing due to the result I was given from taking the Broader Autism Phenotype test.  I was told “You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype.”   It also said something about having an “aloof personality” something I’ve been accused of my whole life.  So I did what any sane human being would do – I retook the test.  This time the results said I had scored above the cutoff on two scales and therefore it was no longer “clear” that I was either autistic or on the broader autistic phenotype, but rather “likely” that I was.

And no.  I do not intend to take it a third time.  However I have resisted (so far) the desire to do a more thorough research of this test, how they are scoring it, exactly who is taking it, etc.  I so want to share my conversation with Ib, but didn’t think to ask if it was okay, so I’ll just share some of the tidbits from me, which is a pity as Ib had the best lines and is hilarious.  Ib is truly one of the funniest people I know, which, given the current view of Autistics being unable to understand irony and sarcasm, makes her so rare, she should be concerned that some autism specialist doesn’t catch wind of this lest they cart her off and stick her in a cage for more thorough examination.  But then those specialists haven’t gone on twitter and read tweets from my friends CoyoteTooth, HardAspie, TwinsMa, or AspieChap, nor have they listened in on FaceBook conversations with Brigianna, Kassiane, Julia, Rachel and countless others, all of whom have the whole sarcasm, appreciation for irony thing down to a science.

But I digress…  So in response to a hilarious, dry comment by Ib about my newly found status/nonstatus/questionable status I wrote:  “Ib… I do love you so.  And you really, really make me laugh, because you have that (oddly nonAutistic) humor, which clearly, despite being saddled with autism, you have managed to hang on to.”

To which she wrote something I cannot repeat.  And then mentioned one of the other myths regarding Autistic children, (it’s always regarding children and not adults because the common perception is that there are no Autistic adults and evidently never will be) which is that they are all so “exceptionally beautiful.”  This is something many have written about in a great many books, memoirs and on every single one of Emma’s reports and evaluations.  Each is prefaced with – “Emma, a beautiful little girl, of 5 years and 2 months, bounded around the classroom, only stopping to pick up a chair, which she hurled against the wall.  She spoke in one or two-word utterances, refused to obey any of the rules….” and the report would continue with the evaluator’s “observations” of Emma’s various activities as one might write about an animal under observation in the zoo.

So I responded to Ibby with this:  “…but that whole “oh they’re angels sent to us from God is crap.  I’ve heard the whole “unusually good looking” thing and I, personally do not see this as the case.  Sure there are lots of cute Autistic kids, there are also lots of really “cute” non Autistic kids.  I mean isn’t this the puppy syndrome?  Most puppies are pretty damn cute.  I think it’s that NTs expect an Autistic kid to look “weird” and so when they don’t they say, “oh she’s an angel, sent to teach us lessons that we’ve still not learned and never will, but while we’re NOT learning them at least we can feel better that the kid is so damn cute.

 SOS – Need Ibby home NOW..  Losing all patience with humanity’s stupidity…..  eeeeeeeeeeee”

Ib then responded with a whole diatribe that was so funny I laughed out loud and she ended said diatribe with the word – “sarcasm.”

I responded:  “I know you identified that last bit with “sarcasm” because now with my newly found identity you are assuming I’ve lost all ability to understand that that was in fact sarcastic.  Richard only this morning pointed that out to me and I tell you, it was an enormous relief to me.  Because now that it seems I am (at the very least) precariously close to being near if not ON the spectrum I will be humorless, incapable of understanding nuances and suddenly, miraculously very good at math, plus my IQ will take a massive leap upwards, for which I am extremely grateful.”

*To all whom I’ve now offended, this was not meant as offensive, but was poking fun at just a few of the ridiculous generalities, assumptions, theories and labels that continue to plague anyone who is Autistic.  And anyway if you reached this far and are still offended you clearly did not read the warning label, which suggests you are not good at following rules, coupled with your inability to see the humor, I therefore encourage you to take the Broader Autism Phenotype test.

My two exceptionally beautiful children (sarcasm, sort of)

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37 responses to “An Identity Crisis and Other Ramblings

  1. The exceptionally cute comes from having two heads (evidenced by the photograph); by adulthood, we have learned to: bury a head, save face, become one-faced, face-it-alone, go below the surface, turn face, face-off, face-on. One face spills forth mathematical giddiness (dribble bibs required when one engages in polygon humours), while the other face dances in public absurditities. The laugh that only dances in the eyes.

    No tests are needed for understanding, caring, and helping. The sum of you is greater than all the parts of you. Labels are put on things in stores for people that can’t figure out what they are purchasing.

    We know WHO you are. The what’s may simply help you along the way. The whys are for the curious. The when’s and where’s are singing together in the time-space contuniuum whilst bouncing on a trampoline.

    • Oh wise one,
      I am honored to share face
      book friendship,
      fly in spheres of tweet
      you anon,
      joyous bouncing
      on shared virtual trampoline
      whilst laughing gaily in the face
      of idiots
      You
      I admire, role model, mentoring
      wishes of arbitrary wanderings
      spotted pintos
      yelling Taxi!

  2. Thank you for making me laugh today Ariane! Love this post. The misperceptions are so ridiculous and I thank you for making this known on a regular basis! ( I would give you a hug, however given your newfound status on the spectrum you probably don’t enjoy affection) 🙂

    • No doubt hugging will become problematic.. it seems clear this is in my future, but for now, before the full weight of newly found status is upon me, I will grab that hug and return it. 😀

  3. Not once in my childhood did anyone refer to me as cute, adorable, or angelic. You have clearly found the smoking gun which proves I can’t possibly be autistic.:p

  4. You crack me up. 🙂 The only thing I can say for the tests are that it gave me the “out” for expecting too much from her. I did NOT say it stops me from expecting from her or having the bar off the ground for her. Just I don’t need to see it as a refection of me (something all parents should get rid of anyway) and be the parent she needs not the child I thought should result from my parenting. I am greatful for the testing if only for forcing myself to give up the stupid ideas I had of who she should be. She and I are much better for it. As always, love reading your blog!

  5. Of course I couldn’t resist taking the test..hilarious! Here are my results:

    “You score above the cutoff for both aloof personality and rigid personality, which means you’re probably not very interested in interacting with other people and don’t like changes. You might have a tendency to be fairly controlling in interactions or prefer doing things by yourself partly because you have more control. However, when you decide to interact, you probably don’t have too much difficulty communicating with the other person and making a good impression. You are probably either on the broader autistic phenotype or actually autistic”.

    Now I know I am one of all those “out there” who correspond with you, who are so intelligent and have a sense of humor and can communicate so beautifully through writing. I embrace all of you! And am delighted to join the ranks growing every moment in numbers.

    We must realize that also under our autistic label would fall all those hundreds of thousands who are hermits, live in convents or monasteries, especially the silent orders, wander the earth alone, prefer to communicate with nature or animals rather than with humans, work mostly in laboratories or observatories, in fact most scientists…need I say more?

    Autistic Granma

    • I KNEW it! Rigid, controlling, aloof… what more needs to be said? And imagine if Pop were still alive. He would certainly have scored off the charts and would have been proud of that fact, he always carried such a dim view of mankind!

  6. I was interrupted by the electrician who just arrived to repair lights in the kitchen, and with whom I could meaningfully have a conversation about light….

    Biblically speaking, light is a symbol of deep understanding, of stepping out of the darkness into reality, of seeing into the essence of things. One of your correspondents, I forget which one, said that when observing a Rorschach test ink-blot was asked what he saw, responded “I see an ink-blot”. To me that is a sign of brilliance, of seeing deeply into something, into reality.

    Humor according to my father, your grandfather, and Emma’s great-grandfather, (that of course adds up to 3 different persons) is a sign of genius, because the humorous person stands outside of the crowd and observes it from a different perspective, which makes him/her laugh and others then laugh with her/him.

    All of this just to say that there are more on the autism spectrum than have actually been diagnosed, and I am beginning to think that I am more comfortable with them than many of those thought to be NT.

    With love to all out there who see an ink-blot for what it really is,
    Granma/Mom

  7. Will have to try this out one day when I’m on the computer not the phone . . . 🙂 quite likely I’ll join you
    thank you for the giggle

  8. Ariane! I am so happy you are your happy self again! I was concerned❤
    I was one of those ” beautiful” autistic children. I was actually teased for it! AND everyone thought I was some kind of angel or saint. I think it comes from an otherworldliness, or far-away dreamer quality. An overwhelmed, dazed expression can be seen as calm, but combined with intense eyes makes for a portrait-worthy quality. I think it served me well while learning to find my way. My wonderful husband says my pretty comes from within. I hope that is true! XO!

    • Chou Chou! I saw your email this morning, and I promise will write back right after leaving this reply to your wonderful comment. So happy to hear from you. And by the way, you were right, I did have a couple of weeks when I just felt completely spent and exhausted, so you didn’t imagine that. But yes, I’m back to feeling quite cheerful again and now all the more so from hearing from you!!
      Your point about the look of overwhelm mistaken for dreamy, far off, even ethereal is such a good one.
      And your wise and loving husband is right. Your beauty radiates from within, Chou Chou.

  9. Here were my results.

    You scored above the cutoff for rigid personality, which means you probably don’t really like changes, especially unexpected ones. You may have a daily routine that you seldom vary, dislike going to unfamiliar places or meeting new people, or have specific rules about how you do things which you refuse to change. However, you are not particularly aloof, and probably don’t have much trouble with social communication. You are probably on the broader autistic phenotype.

    I noticed they based alot of it on whether or not you enjoy talking to strangers? Weird.

    What’s even weirder. My entire life I’ve been a talker. Ask anyone who knows me. As a kid, I never shut up, I drove everyone crazy. I have a very high strung personality, as well. And I’ve always enjoyed new situations, meeting new people, etc.

    The last few years, this has all started to change. I don’t know if it’s due to my depression and anxiety issues, or what. But people tell me I’m much more quiet. I avoid going out, if possible. Some of this has to do with staying home with Marisa for activities that aren’t appropriate, but most of it is just me.

    Sigh. I think I like the person I used to be, alot better.

    • this could be viewed in several different ways, first you might gain more friends now that you are not so talkative because everyone knows that people really like it when you’re quieter so that they can talk about themselves, unless, of course you spent all your time talking ABOUT them (in a good way) in which case you’ll lose those friends, OR you can see this as a time of change and change is usually good, unless of course it’s NOT good in which case it’s very, very bad, but either way, you’re screwed because you’re rigid and that’s something you’ve probably always been even when you were talkative, just rigidly talkative and now you’re quieter but probably in a quietly rigid sort of way, but at least you aren’t also “aloof” because then no one would know what to do with you and no one would want to be around you at all… So there is that, at least… 😀

  10. We too are at the point in our journey were we enjoy having fun with the stereotypes. Last month when I went to open my birthday present I paused and said that I was waiting for Ted to sit down so he could watch the look of joy and surprise on my face as I opened my present. He grinned and replied, “Yeah, because you know I am all about that!” Embrace and enjoy. 🙂

  11. paulazurcher@comcast.net

    Ariane,

    I love your blog, Emma’s Hope Book, I love your humor, I love your frustrations, your regrets, your triumphs, which way outweigh everything else and all the marvelous comments.

    Today I sent on to my sister, Toni, the Broader Autism Phenotype test, but so far have not heard back from her. As she is very social, she may just be off the spectrum and completely NT. But I’ll bet my sister Nina would have been right there with us, and I mean All-of-us-autistics.

    The door is widening daily letting more and more light in to conquer the darkness, so keep on knocking and pushing at it and more and more will answer.

    With unbounded love,

    Mom/Granma/TheAutisticOne

    • Nina yes, Toni, probably not so much. But you know, she should take it five or six times through out the day, and then take the average and go from there. Also, you could give her CoyoteTooth’s formula which appears to use some calculus mixed with poetry, and that might get a different result. 🙂

  12. Hold on… our reports brim with the word, “adorable.” I have not seen the word “beautiful.” IS THERE A HIERARCHY I AM NOT TOLD ABOUT?! What is the cut-off from the “adorable” end of the spectrum toward the “beautiful” end of the spectrum? I can’t wait to have my kiddo shed the “adorable” perceptive diagnosis and become indistinguishable from the peers on the “beautiful” perceptive diagnosis. How do I get insurance to cover this.

    • What?!! You received the word “adorable” on an evaluation? GASP! Our insurance won’t cover “adorable” “cute” “beautiful” “pretty” or even the dubious “sweet” distinction. Clearly there IS a hierarchy… but they won’t tell us exactly what it is. Though I have been told (lowers voice to a conspiratorial whisper) that if you rub a special lotion on the bottom of your child’s feet and then put socks on over night, the socks will leech out all the adorable toxins and after a few months your child will no longer be. Let me know how it goes…

      • No fair, 12 years of IEPs and all we got was one stinking “attractive”. (Yeah, I just looked.) 🙂

        • Obviously this evaluation you have dug up was NOT for your adorable, beautiful Teddy. but some other child who did NOT fall on the spectrum. I’m told this can happen. Also one must factor in your cuteness/beauty (depending on who’s evaluating) and with your new pixie hair cut pushing you right into the downright adorable category, it is a given that your child must be massively handsome (oh no, sorry, that’s too manly a phrase we must infantilize or it doesn’t really work…)

          • All those years of IEPs and we were clearly focused on the wrong goals. Forget organization and social skills, HA! Such foolishness. I should have been striving for the use of awesome superlatives of our clearly obvious physical traits. Teddy, of course, is nothing short of Precious and me, well, duh, Smokin’ Hot!

            I want a do-over! (said while stomping my foot)

  13. So I took the test and I’m happy to report I passed with flying colors as evidenced by my “above average” scores in each category. Oh wait, it’s not that kind of test? The inane description that came with the scores sent me off in search of more info about the Broader Autism Phenotype (never heard of it) so at least the result was somewhat edifying.

    • Ha! I never got around to searching for more information, though I certainly thought about doing so! Find anything interesting?

      • In a nutshell, the Broader Autism Phenotype is a way of describing the phenomenon where parents/siblings of children with an ASD are more likely to exhibit sub-clinical (not strong enough to merit ASD diagnosis) differences in social skills and neurocognitive function when compared with families who don’t have any members with an ASD.

        The most consistently reported differences (i.e. ASD-like traits) in parents and siblings are in the area of social communication and behavior which probably explains the apparent bias of questions on the quiz toward social skill-oriented questions.

        I found a great review article that summarizes BAP and its potential implications for families with members who have an ASD. If you’re interested, I can share the link (I’m not sure yet about the conventions of sharing links in comments and don’t want to come across as spammy or whatever).

        • Yes, please would love links! The thing about all of this is that it comes down to a matter of ability, so while someone (me for example) doesn’t particularly enjoy cocktail parties, they are still able to behave appropriately when at them, they just might choose not to attend them very often. But someone, who is inundated by sensory overload, cannot filter the bombardment of stimuli at such a function, there isn’t a choice, and that, it seems to me is a fundamental difference. So while this test may show preferences, likes and dislikes, without studying the sensory issues, it remains a choice. I guess I come closer to many Autistics in my preferences than my NT peers, but I don’t have the massive sensory challenges and so remain pretty firmly rooted in the NT world. What do you think?

          • The BAP review article is here: http://www.hindawi.com/journals/aurt/2011/545901/

            I definitely agree with you that ability and preference are two different things. An unstructured social event like a cocktail party is fraught will challenges for me and I’ll be worn out after an hour or so. I’ll probably enjoy parts of the evening, but the anxiety in the days leading up to it and the stress of getting through the event are intense and draining, so it’s much more than a simple matter of preference. The test definitely didn’t account for the difference in why we’d both rather limit our cocktail party attendance. 🙂

            • Hey, thanks for sending the link. Yeah, neither one of us might choose to go to a cocktail party, but if we did, it would be a very different experience. While I might feel bored, indifferent or just annoyed that social constraints required me to stay the required 20 or 30 minutes, when I left there wouldn’t be much fallout. My guess is your experience would be quite a bit more severe and the recovery time probably longer.

            • You’re welcome. The article is looong but it has some interesting bits.

              And you’re right about the fallout from the party. I’d need a nice long period of silence and alone time, if not a nap.

  14. Hmm while it would hardly be earthshattering news that the family that produces someone with a diagnosis of autism is BAP (that’s pretty much the whole point of the phenotype business) one does wonder about the scientific validity of a test that comes produces results like: You scored 123% on aloof, higher than 87% of your peers.(How can I be 123 percent aloof?) You scored 126% on rigid, higher than 95% of your peers. and You scored 117% on pragmatic, higher than 94% of your peers.. 23 percent more aloof than aloof?

    I must have become more amiable in my old age because there being 13 percent of people (who took the test – talk about your built in bias) more aloof than I am is an amusing thought. Who decided that actually being diagnosed with autism was a 10 percent thing? Was another choice a higher number? You scored 10% on diagnosis, higher than 94% of your peers.

    Oddly enough I don’t consider myself that rigid. There are many things I am downright flexible about but just not the things they asked about on the test.

    I like my routines and yes things must go a certain way but is that all that is meant by rigid? I have very flexible notions about all sorts of things so it seems unfair that just because my blankets needs to go on the bed in a certain order and they all need to be there regardless of the season that I am rigid. I am quite flexible on things that Republicans seem rigid about. (We don’t actually have Republicans up here but they don’t seem like the most liberal thinking crowd) I suppose diagnostically that actually being flexible in terms of social issues is again a tick in the autism box as you are insufficiently concerned with societal norms and values.

    The bed thing came up today as the useful nurse (as opposed to those who just sit around and ask me about eating and sleeping) helped me make my bed and she questioned why I had summer sheets if I then added all those blankets. Sometimes because I live alone it surprises me the things that just are not that way for other people. It seems blindingly obvious to me that if I don’t have the “right” blankets on the bed in the “correct” order that being too hot will be the least of my problems as I will lie in bed getting anxious about that until I have to get up and change them around.I know it is irrational. I know that’s not how other people do things but that’s reality. I got a little bit more flexibility when I finally got a double bed as my rules for that kind of bed were looser but over time they have firmed up already.

    I was curious about who these casual acquaintances they kept mentioning are. Shouldn’t there have been a question on if you even believe in such a category people? Someone I would only know casually is indistinguishable from a total stranger to me. (I can’t reliably recognize people until I know them well enough to have memorized them and I can’t be bothered with memorizing people I don’t like or don’t think I will encounter so I suppose there is a bit of a culling there. )

    There is some very interesting research going on in the UK looking at families of autistics. The short version of it comes out as lots of things that would be an early indicator of autism in families that hadn’t produced an autistic child were absolutely useless as predictors in siblings. That parents also had areas of developmental history that would be considered predictive etc… None of that is huge news. There are all sorts of correlations with various professions etc… and the liklihood of producing autistic offspring. I don’t consider many people in my family line to be purely NT but I am the first person where it reached a level to be disabling on some level rather than essentially helpful (a strong dose of stubborn and rigid was needed for some of the enterprises my ancestors were in to)

  15. The visible results when I took it: 3 out of 5 were coming out BAP/autistic one socially odd and only one NT so pretty sure my stats professor would have something to say about the test design or subject pool.

  16. Gareeth, I had to laugh when I read your comment. 123%? Seriously? They could have saved themselves some time and energy by just saying, “You scored off the charts…” I really loved this – “Shouldn’t there have been a question on if you even believe in such a category people?” And you ended with – “(a strong dose of stubborn and rigid was needed for some of the enterprises my ancestors were in to)” which made me wonder, exactly what sort of businesses were your various ancestors involved in? Now I’m so curious!

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