ink on the sP ectrum By JENNIFER COOK O’TOOLE

you know that a rue-anenome is these characteristics will be the diagnostic criteria an imperfect flower? Now, until for whether or not something is a flower. yesterday, I’ll admit I would’ve Would that be accurate? Did They saw, noted, and reported a pattern indigestion, even nonspecific, general As the red dress campaign has gone guessed it was actually some oceanic creature. of characteristics, just as we did with malaise because they didn’t experience international, gaining much more public But it’s not. It’s a pretty little wildflower - albeit, an Well, partly. Some flowers do have all of these parts. our flowers. But instead of recording numbness down their arms or shortness of awareness, popular culture - and medical “imperfect” one. However, if we had picked another bunch of rue- petals and filaments and then creating breath. In other words, they fatally ignored professionals in general - have begun anenomes, we might just have easily seen all of the OK, let’s stop right here. Let me promise you a “diagnostic criteria for flowers,” these normal female histology simply because to integrate the female expression of same characteristics - except the last two. Instead, something. This is not a lesson in botany. So even if scientists (like Dr. Hans Asperger himself) everyone expected female bodies with heart disease into their understanding of in this second bunch of flowers, we would’ve seen plants aren’t your thing, just go along for a moment watched people. Children. And primarily, the same medical condition to present overall symptomology. In other words, observed a carpel - containing the ovary, stigma or two. they watched boys. exactly as male patients did. symptoms that “look like a female heart and style. So - what does that mean now? Are these attack” are finally catching eyes and Alright. Back to the rue-anenome. Let’s be very other blossoms not flowers? Not surprisingly, then, the constellation Let me be clear. I don’t believe that doctors and as many additional clinical and professional now - looking carefully and of behaviours, strengths, challenges, and were intentionally being irresponsible or Of course not. You see, it turns out that a rue- manifestations of “a heart attack,” regardless taking notes. And what do we see? Well, beyond tendencies that became the medical and unprofessional. They did the best with anenome is one of the very few plants whose flowers of the patient’s gender. saying, “Ooh! It’s pretty!”, if we truly dedicated a year public “profile of ” (and Asperger’s) what they knew - but what they knew was have either male or female parts, but not both. to watching one blossom on this pretty plant, we is distinctively, decidedly “male.” More boys decidedly (and disturbingly) incomplete. Autism is pretty much the same. might record that the flower: That’s what earns the designation “imperfect.” are, logically, going to fit a profile that was And as Maya Angelou said, “When you Official diagnostic tests - even the general created by observing and describing boys! know better, you must do better.” • blooms in early spring Most flowers we know - roses, tulips, daffodils - are way society at large conceives of autism “perfect.” They include both male and female parts; The male experience of floweriness or and Aspergers - deploy criteria developed • has petals we’d never have to make a qualification that “Male” autism - or hunger or laughter – is neither by men based upon patterns they • has sepals (small leaves under the stem) roses and “female” roses are similar, but a little bit neutral nor universal. It’s valid. But it’s only observed in boys. Of course more boys different in the way they express their ‘rosiness.’ part of the story. than girls will fit those criteria - even now. has a peduncle (a stem) • We can just say “roses are....” and finish the sentence. If you define a “child” as a young person Until quite recently, women around the with a head, gut, and testes - girls don’t fit • has pollen-producing anthers world were dying in terrific numbers from But in the case of rue-anenomes, one blossom - or the bill then, now, or ever. • has slender filaments even many of them - cannot represent all. heart disease because they were looking for “traditional, expected” symptoms of Like the “imperfect” flowers, there are Let’s say, in fact, that we notice many rue-anemone Who cares? We should. I certainly do - at least in heart attack, like shooting pains or sudden commonalities between the sexes - both flowers, and while they may vary slightly in size or “people” terms. Here’s why: the vast majority of weakness. And these are, most definitely, blossoms have petals and both genders shape, they all have the same characteristics. And foundational observation of, and work with folks symptoms of heart attack – in men. of Aspies have sensory challenges. But so, we report our findings: a flower is the part of a “on the spectrum” was conducted by male clinicians Women (and their doctors), by and large, one rue-anenome or one gender of Aspie plant that has...and then we fill in our list. Hereafter, with male patients. were dismissing sudden onset lethargy, cannot represent the entire population.

18 AUTISM ASPERGERS NETWORK MAGAZINE AUTISM ASPERGERS NETWORK MAGAZINE 19 Neither can a clinical and “vernacular” Barbies are quietly acting out a Girls who don’t fit in are casually dismissed as “too idea of “what autism/Asperger’s looks historical event or favorite Greek like’” be complete if it is “skewed” to myth. Maybe a child is fascinated with smart,” “oversensitive” and “dramatic.” Adults will more readily include one gender medieval times. While a boy dons his shrug, “Girls can be so mean.” Or they pejoratively and frequently overlook or mislabel sword, his sister may be dressing up attach labels like, “bossy” or “stuck up” when they the other. in a princess gown. Looks “typical.” That’s because with girls, it’s less the ought to use the one that can help: “Aspie.” An inclusive representation of the topic that’s unusual and more the spectrum includes all phenotypic intensity of knowledge. expressions of our neurological hardwiring. But that’s not what’s Go ahead. Ask that “princess” if she’s For example? At two Ivy League universities, the eye as an equal when you’re up there. on” or approached by lots of guys. being taught. Yet. “Cinderella,” and she’ll promptly I achieved a 4.0 during my undergraduate They look at you like an object. And every The “beautiful” one may not -- she’s tell you which of Henry VIII’s wives and graduate studies. Yet (as a WOMEN’s object is disposable. Which is why it annoys intimidating. She’s intelligent, she is Present high-level mental health she is impersonating...and then will STUDIES minor!) I saw my real “successes” me to no end that the world now uses the kind, she’s confident in who she is, and she and educator training (I studied proceed to list all six - in order. as having been accepted into a sorority word “hot” to mean “beautiful.” They are seeks the beauty in other people. Learn to both), testing procedures, and and chosen as a college cheerleader - two NOT the same thing, and the difference be her by learning to be the best you. the public’s general conception My work with families around the stereotypes that, to me, indicated (FINAL) between them is where I got very lost. And of what is or isn’t Aspie/autism, world has shown me time and The truth is that girls who “perform” social acceptance. Albeit subconsciously, very hurt. like our flower, is “imperfect.” And again, correct diagnosis is the key to convincingly do not really understand the I even used my academic acumen to that’s a VERY big deal. Clinically, accurate self-concept, independence, In the simplest of terms, the “hot” girl underlying nuances of their behaviour, ensure those feelings of having “made the result is a 4:1 (or higher) male/ productivity, and overall happiness. is the one all the boys are staring at. and often give the impression of being it” would last. The chosen topic for my female ratio of diagnoses; when On the contrary, the damage of missed The “beautiful” girl is the one all the much more savvy than they actually honors thesis? “Barbie” as a didactic tool of more “gender neutral” instruction is or misdiagnosis is unfathomable. girls are staring at. The “hot” girl needs are. Sadly, perfectly-mimicked, naively- postwar modern femininity in America. In provided and assessment tools are attention, and gets it. She will be “hit wielded flirtation often lands these girls Among women diagnosed as adults, other words, I literally made a thesis out of employed, that number is much rape, abuse, and victimization is, researching my own role in my own society. closer to 1:1. (Dr. Judith Gould, in my personal observation, the The Lorna Wing Centre) But there’s a very big “catch” to all of this. rule rather than the exception. As I wrote to the teenagers reading The Like their struggling male “When you’ve come to believe Asperkid’s (Secret) Book of Social : counterparts, young women are you’re difficult to love,” said one just being entirely themselves -- woman, “you’re willing to accept When I was in high school, I was cast as loyal, curious, intense, and often, crumbs of affection, no matter what the lead in the musical “Damn Yankees.” lonely. They don’t meant to, but no degradation comes along with it.” My part, Lola, was a vamp -- “Whatever matter how intelligent they - we - Lola Wants, Lola Gets,” by means of “A Little It has been reported that girls are, they miss a lot of social cues... Brains, A Little Talent” with the emphasis on and women on the spectrum are not because of egotism or laziness... the “talent.” And Lola’s talent was winning uninterested in traditional gender because of Aspergers. Yet within the men. She was -- and therefore I had to be roles or in “looking girlie.” That can gift of a spectrum diagnosis is the -- “hot.” Dancing and singing about in front be true. By and large, these girls “stick balm we all need: self forgiveness, of 1,000 people a night, I stripped down out” more, and thus are somewhat explanation, and great, great hope. to fishnets and lace. “Dictionary Brain” had more apt to win clinical attention. shaken up the scene, indeed. And it made Girls are no “less Aspie.” We’re just less However, other girls are deceptively quite an impression on the student body. obvious. Diagnosticians looking for adept at and very eager to get “typical” Aspie traits are, unwittingly, It also made quite an impression on me. “being a girl” right - as much as looking for typically “Male Aspie” In the span of one weekend, I literally went their perfectionism drives them traits. So without malice, they miss from having almost no social life to feeling to get everything else “right,” too. and mislabel the girls. like the honeypot surrounded by awfully- So, we - as this category certainly hungry bees. Boys were everywhere. For example? Special interests like includes myself - overachieve and Calling, flirting. Walking me here or driving Thomas the Train, dinosaurs, space, intellectualize. We study fashion me there. There were party invitations architecture or transportation are magazines and popular culture every weekend. It felt like I was Alice very common among boys. Not so as instructional texts. We expertly through the looking glass, and I did NOT much among girls. Instead, girls may copy alluring mannerisms, witty want to leave. adore Smurfs or become professorial turns-of-phrase, coy gestures, and about historical figures (like Laura a “traditionally” attractive (often But I learned, fellow , that when Ingalls or Helen Keller), or maybe provocative) appearance. We try to you are put up on a pedestal, you can get fairies or Barbies, especially if those embody a caricature. knocked down fast. No one looks you in Image courtesy of the Asperkid’s, Not Your Average Coloring Book 20 AUTISM ASPERGERS NETWORK MAGAZINE AUTISM ASPERGERS NETWORK MAGAZINE 21 in precarious situations which they are As the mother of a daughter and two sons ...the teacher continued to lecture not truly prepared to handle, becoming -- all on the spectrum -- I never ceased to [my husband and me], observing that yes, easy targets for sexual predators and self- be amazed at the difference in the level of our daughter did hold back from groups, but medication (through tobacco, drugs and/ advocacy I have always had to take on my ‘I think she’s just a lot like you, Mr. O’Toole’.... or alcohol). daughter’s behalf versus my sons’. In fact, six months later, John’s own psychologist the meticulous work I had to construct to diagnosed him with Aspergers.” Social naïveté makes them prime “prove” her Asperger’s was what, in one Our child psychiatrist (who eventually targets for elaborate practical jokes, and year’s time, led to the subsequent “easy” encouraged me to write Asperkids) agrees damaged self-esteem leaves them apt diagnoses of my husband, my two sons, that the didactic roles, for a time, were to seek approval or affection through and finally, of myself...and the writing of reversed. “I didn’t see her Asperger’s at first, sexual encounters -- a risky, heartbreaking my first book. exchange that only brings further ridicule as I did with your sons. You made the case, and mockery. Further, the prevalence of Though we sought out “experts” with point by point, and asked me to stick around anorexia and bulimia - a common “female” excellent credentials and good intentions, without judgement for a month or so. the onus fell upon me - time and again - to manifestation of anxiety and cognitive You were tired and had been through a prove the “case” for her Aspergers. rigidity - is tremendous among this group. wringer of psychologists and specialists Yet traditional eating disorder treatment - In “Asperkids: An Insider’s Guide to Loving, and I’ll be honest, I thought you’d be wrong expensive and often humiliating - misses Understanding and Teaching Children about her. You weren’t. Every observation You encouraged me and told me why it IS the root cause almost every time. with ,” I describe the was spot on, and four years later, not only important to diagnose. Well, we went back exhaustion that comes with the never- do I have no doubt about her Asperger’s, and the doctor finally said ‘Yes. She’s on go far beyond “getting more services at As years pass, brilliant, capable, undiagnosed ending “proving” of our “invisible disability you taught me what some of the world’s the spectrum, I just don’t like to diagnose school.” Around the world, marriages, girls grow to be undiagnosed women who in pink.” best medical schools couldn’t.” it because it’s a hard label to remove.’ careers, families, and futures depend on have had to endure bullying, violence, Even now, she said she is only doing it for gender-blind recognition of all unique and systematic professional failures. Even “In an arrogant tone, [the career teacher] As the daughter of a litigator, I met the Perhaps it’s not coincidental that my us because she thinks it will get us more minds. more heartbreaking, these women and doubted the accuracy of [our daughter’s] “prove the case” challenge head-on. But I daughter’s favourite colour since infancy services at school. I pushed thanks to your girls often find themselves blamed for their Asperger’s diagnosis (as if it’s an easily- shouldn’t have had to. I should not have has been purple - and that we celebrate encouragement, and she is finally willing Asperkids, you see, are like “perfect victimization. Almost without exception, achieved rubberstamp); however, when had to be the educator to the psychiatrists, her birthday every year with “Purple Day.” to “say it!” Now my girl can understand why flowers.” They are boys. They are girls. female Aspies find themselves with a litany I asked her... how many GIRLS with psychologists, and teachers. It was their Because as a woman with Asperger’s and the world is so frustrating AND we can They already ARE the entire “perfect” of mislabels (often “bipolar disorder”) even Asperger’s she had actually taught, job to help her – to help us. And I do the mother of an Aspergirl, I ask that when work on the positive in this. She is crazy- spectrum. Nature is inclusive even when as clinicians agree their patients never truly she conceded the answer was “none.” believe they tried. The simple fact is that we “light it up blue,” we add some pink. smart and will do AWESOME!” under-informed adults aren’t. “fit that criteria.” [‘Somehow, ma’am,’ I replied, ‘I doubt that.’] they didn’t know better. “The spectrum,” after all, contains pink, A hard label to remove? As an Aspie and And so I implore you who, like me, blue, and a mix of both. the mother of three Asperkids, I could tend the kinder-”garden.” May we take Girls who don’t fit in are casually dismissed not be more profoundly offended. Insert the time to spot all of the seedlings. as “too smart,” “oversensitive” and “dramatic.” another minority “label” - racial, religious, To support them during the storms Adults will shrug, “Girls can be so mean.” ethnic - and I doubt such a thought would and nourish them as they each need. Or they pejoratively attach labels like, be tolerated. Let’s recognize the “perfect” flowers – the “bossy” or “stuck up” when they ought to roses “by any name.” And then, we can Built into that casual phrase is extreme use the one that can help: “Aspie.” watch them grow, full of the promise bias toward the “shameful” spectrum and possibility, beautiful people just My daughter and I have one another; we label which, I for one, would not wish to beginning to bloom. are unique in that advantage. Too many “remove.” Sadly, though, this one clinician’s women and girls are without equal access ignorant attitude is not only professionally to the support and understanding they irresponsible, it’s extremely common. deserve via proper diagnosis. Of this I am So let’s clear something up. Diagnosis reminded constantly. is identification, not commandment. Only two days ago, a mother named A name does not make anyone an “Aspie” “Sara” wrote to me: any more than declaring “It’s a girl!” causes a newborn to become female. We are who “A few months back I commented on one we are whether or not the pediatrician, of your posts, saying that our doctor told psychiatrist, or teacher knows what to look me our daughter was just ‘tired’. And I for or why to bother. was like, pretty sure tired kids don’t pace the house in a set pattern and swing all But naming the “difference” sure does the time. I will never forget leaving that help. The consequences of “lighting it up doctor’s office in tears. purple” are profound and lasting, and they

22 AUTISM ASPERGERS NETWORK MAGAZINE AUTISM ASPERGERS NETWORK MAGAZINE 23 RECOGNIZING ink on the sP ectrum Look closer. Ask more questions. The girls need you. Ë Girls’ “special interests” are often similar to their peers’ (fashion, popular fiction, historic eras, animals, faeries/mermaids) -- the level of intensity/ factual knowledge, rather than the topic itself, is what sets them apart. Ë The special interest still serves as an escape - note its function: transport to a distant time, place, species or social scenario where interpersonal rules and customs are clearer (fantasy worlds, folklore, historic periods where customs, clothing, relationships Ë Parents or teachers may see girls playing “typically” with and languages can be “studied & mastered”). dolls or dress up clothing. But a closer look will usually reveal play scenarios that are restrictive to strict, special-interest-driven Ë Girls often collect information on people and cultures rather scripts (i.e. “Barbie” dolls who are actually re-enacting Greek than on things. myths or news events). Ë “Lining up” of girls’ figurine collections (Smurfs, American Ë Asperkids - especially girls - are likely to research and girl dolls, books in a series) looks less conspicuous than rows of intellectualize the social roles others glean organically. They toy cars. Those displays still reflect an interest in setting precise will gather and memorize as much information as they can on “tableaux,” not spontaneous, interactive play. social roles and sexual expectations, sometimes endangering Ë Girls often on having one, all-encompassing themselves in the process. “best” friend; later, this may evolve to an all-or-nothing self Ë Looking or sounding “fashionable” is as common among concept of being in or being able to “keep” a dating partner/ girls on the spectrum as is disinterest in appearance. Girls on the spouse, at any cost. spectrum are frequently fantastic mimics (often augmented by Ë Relationships may be much more about perception involvement in theatre) who meticulously assemble a “desirable” than substance. persona or “facade.” Ë Asperkids in general have a limited understanding of the Ë Eating disorders like anorexia nervosa and bulimia should “levels” of friendship - so that they cannot clearly distinguish be considered “red flags” - indictors of perfectionist tendencies, an acquaintance from a close friend, nor can they define what internalized self-punishment, a need for artificial control, extreme constitutes an actual friendship. rigidity and adherence to routine (Dr. Tony Attwood, 2009). More often than not, they are rule among women on the Ë Rather than asking if a girl “has friends,” a qualitative spectrum, rather than the exception. investigation is more productive: descriptions of her “friends” may reveal little evidence of reciprocity or depth (question how Ë Being overly “bubbly” and magnanimous is a common we know these people are friends, do they play together outside (yet exhausting) way many girls on the spectrum camouflage of school, how often? - Asperkids may perceive a classmate who their social anxiety. Diagnosticians and teachers must look never invites outside socialization as a “best friend.”) beyond the surface to determine organic from affect. Ë Girls will often take on the role of “boss” of younger children, Ë Look for “phases” of intense friendships with “break-ups” or needier/”new kids”/exchange students or of a precocious “little sudden ends. Being able to establish friendships is very different sister” - peer-to-peer collaboration is MUCH harder. from being able to maintain them. Ë They may come across (unintentionally!) as braggadocios Ë As boys may study train charts, map coordinates or military know-it-alls, and frequently see compliments to others as tank schematics, girls can also focus on graphic organizers and insults to themselves. Both behaviours reflect theory-of- charts, most often pedigrees or family trees, devouring limitless challenges and low self-esteem, not arrogance. dates and names

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