“I have to tell you something about myself, something important,” I said to my boyfriend. We were lying on a bed in a University dorm, a girl and boy who at nineteen were taking our first tentative steps into the world of relationships.
“You can tell me anything,” he said.
“There’s something wrong with me,” I said. “I mean, socially. I mean, I’m autistic. Well, on the autistic spectrum, and it sometimes makes me seem weird, or socially awkward, and it’s difficult for me to get things — you know, body language things.”
He paused, then broke into a smile. “You’re silly,” he said. “There’s nothing wrong with you that most people don’t have. Sure, you’re a little socially awkward, but you know what, that’s adorable.”
I let it go. I could have pursued it, could have explained how difficult school had been: how I’d gone to see lots of educational psychologists before finally being sent down to London to see Francesca Happe, a specialist in autism, who — after one hour of tests, which seemed like games at the time — diagnosed me with Non-Verbal Learning Disorder, a form of autism. It meant that while I was bright, and loved reading and chatting, I struggled desperately to read social signals. The language of the body, that which makes up an estimated 60% of communication, was almost closed to me. So instead I fell back on words — the safety of which I could understand, as their clarity left nothing to puzzle over or decipher.
In the years between twelve and nineteen, I had taught myself a lot — forcing myself to go out and read faces as you would a foreign script, learning to figure out certain movements and postures. But it did not come naturally to me, as it does for most people. Still, as a nineteen-year-old, newly at University, I could for the first time in my life “pass” for normal, or neurotypical. I felt a bit like a fraud, but it was also exciting to move among my peers and feel, for the first time, fully accepted as one of them. Sometimes I feared the mask would slip, that I would be discovered, but I seldom was — although sometimes in conversation, someone would develop a puzzled look on their face.
My boyfriend called me “adorably awkward,” but in earlier years at school, my awkwardness had never been adorable. I had just been weird, in a “she’s really bloody strange, we better keep away from her” way, more Stephen King’s Carrie than Carrie Bradshaw. When I was thirteen, I pissed in a crisp packet and then held it out to some girls who bullied me at school break time, waiting for them to put their hands in to try to get my crisps. I am not proud of this, but I tell you because as an autistic thirteen-year-old it seemed an appropriate way of dealing with people being mean and calling me weird. This of course did absolutely nothing to stop people from calling me weird, but at the time I couldn’t see how inappropriate my behaviour was. For a couple of months, I was sent to a special residential school for kids with behavioural problems, which was terrifying for all sorts of reasons I won’t go into here, and completely wrong for me.
This story perhaps illustrates how far I had come since the age of thirteen, and why it was easy to lie to myself at University — to say that I wasn’t really autistic anymore, or that by learning about social graces I had somehow “got over it” or “got past it.” I was a nineteen-year-old with long blonde hair, doing a degree in English Literature and living away from my parents in University flats. I wanted to keep my other side secret, or at least attempt to play it down.
It’s still difficult to tell someone who sees you as normal that you are autistic. There’s a feeling of coming out, of revealing something. And then to have that person turn round and say you aren’t autistic — well, that’s difficult, too. I’d like to say that my boyfriend’s words upset me, but it’s more complicated than that: I was both hurt by his disbelief, and strangely thrilled. “Adorably awkward,” I thought, beginning to embrace this new, if inaccurate, diagnosis, given by a boy who wanted me to be normal as much as I did. Here he held out a chance to rewrite my past, to eradicate all the fucking awful weird things I had done, and to become something else — a quirky awkward girl who was adorable. Hell, maybe I could even start wearing a beanie.
The relationship was to disintegrate months later, with him shouting: “Why do you not get it, why can you not see when I am getting angry and need to be alone?” and me in tears saying, “Sorry, I didn’t know, I just didn’t know.” “How the hell can you not know someone is getting angry?” he demanded.
I had given him the answer months earlier, but he had chosen not to accept it.
This experience was not a one-off. Through my early twenties I found that many guys would hone in on my “cute eccentricity,” my “beautiful weirdness,” and, yes, my “adorable awkwardness.” Autism didn’t come into it for them — I was not what people imagined when they heard the word. I didn’t rock in anxiety, I didn’t speak in a monotone, I laughed and danced and engaged with people, showing interest in their work and passions. Here the common misconceptions about autism were both my ally and my enemy: they allowed me to hide, and to embrace a status as “off-key yet normal,” but they also damaged me by giving fuel to the lie that I was just a bit odd, making it all the more difficult when it blew up in my face with someone yelling: “What the hell is wrong with you?”
I met Francesca Happe again a few years ago at The British Library, where we had coffee. I was working with Graeae, a theatre company with an aesthetic of disability, and I was interested in creating a play about what it meant to be in the borderland of autism — peripheral to the nucleus of autism, but nevertheless close enough to be affected. “You’re a pretty girl,” she told me, “and that may mean you have a different experience.”
This fits in with the difficulty girls face in being diagnosed with autism initially, and is perhaps a continuation of this denial — of the view of autism as something somehow male. Young men are believed when they say they are autistic; young women are not, and are instead encouraged to embrace the role of a lovely eccentric, decorative and quirky rather than “disordered.”
Francesca then told me something else: “When you were a child and first came to me, you could pick up some social signals, but the one you didn’t understand — couldn’t begin to understand — was anger.” Even then, the series of faces and postures I struggled with was someone getting angry — I just didn’t get it. Rather than causing complete oblivion to anger, this created anxiety for me: “Are you angry with me now?” I would ask repeatedly. As neurotypical folk can probably imagine, there is something rather scary about not being able to identify facial expressions, especially one as important as anger, and not being able to could easily lead one to a state of permanent anxiety.
Hearing this from Francesca was a relief; I realised it was something I knew but had denied for years, in favour of adopting the socially acceptable quirky image — think Zooey Deschanel as Jess in New Girl — a mould which was a fairly good fit at times, even if it was also false. It was easier for people my age, particularly men, to see my weirdness as a trope, as opposed to a complex neurological condition. For years I was guilty of going along with this.
My current boyfriend understands that I can’t read body language all the time; that if he is annoyed he must state it verbally and calmly; and that clattering resentfully around a messy kitchen, say, will not pass on the message that it is my turn to clean, but simply asking me for help will. Also, he must tolerate my asking if he is angry when he is not. We still argue, and sometimes he does get mad at me. But when he says, “How did you not know I was feeling that?” I have an answer.
Tags: autism, health, hope whitmore, relationships
I really enjoyed this perspective. Thank you for sharing.
I liked this. Also, I don’t wanna invalidate that autism makes this more difficult for you, but I think “if he is annoyed he must state it verbally and calmly; and that clattering resentfully around a messy kitchen, say, will not pass on the message that it is my turn to clean, but simply asking me for help will” is a better communication goal for EVERYONE! A plus man training, keep it up
if he is annoyed he must state it verbally and calmly; and that clattering resentfully around a messy kitchen, say, will not pass on the message that it is my turn to clean, but simply asking me for help will
This seems like a good policy for any relationship, regardless of neurological conditions.
This was so, so good.
I’ve never consciously thought of autism as being male, but now I can’t think of one depiction of an autistic girl or woman in tv, books, etc, but I can think of lots of guys. “young women are not, and are instead encouraged to embrace the role of a lovely eccentric, decorative and quirky rather than “disordered.”” That is going to stick with me.
I’m not sure if this is an exhaustive list, but there are some women on it – still more men, though: http://en.wikipedia.org/wiki/Autism_spectrum_diso…
I wonder if it’s because women are supposed to be Good at Feelings, and this sort of processing is too far from how women are typically stereotyped. Like, there are certain levels of social functioning/emotional processing expected from men and women, and those levels are different – lower for men, higher for women – so when a women doesn’t meet those standards, it’s not viewed as atypical neurology, it’s a deficit in “intuition.”
That, sadly, sounds very plausible to me. Kind of like girls getting under or misdiagnosed for ADD/ADHD as well. When boys act out in school, it’s an attention deficit disorder, but it manifests differently in girls and they usually just get written off as lazy or bad at school. It’s not surprising I guess, but sometimes it is more striking to me all the ways ideas of gender permeate absolutely everything and how many people deal with this crap as a result.
Your second paragraph, but also:
Girls are socialized differently from boys. From infancy, girls are treated differently – it’s not just expectations of adults. Girls on the spectrum tend to manifest different symptoms from boys and also the socialization of girls often matches better with the disorder. At least, that’s what I pick up from things like http://www.aspergerfoundation.org.uk/infosheets/t… (from Tony Attwood’s paper, it talks about stereotypes and stuff)
Men are about five times more likely to develop autism than women. This is very well known in neuroscience and not simply a product of culture; nor is it explainable by diagnosis rates. The reason is due to fundamental differences in the structure of male and female brains that make male brains more susceptible to the disorder, it has nothing to due with culture, it has completely physiological origins. What is cultural is the lack of understanding of mental disorders in general and autism specifically.
It’s actually a hotly debated topic right now. Simon Baron-Cohen’s “extreme male-brain” typology one of the major viewpoints; but there has been research recently suggesting that girls are heavily under-diagnosed, and that the numbers are much closer than previously thought. Other studies have shown that the ways in which the disorder presents itself may be different in girls, with fewer of the stereotypically “autistic” behaviors being noticeable. The reasons for this aren’t certain, but one hypothesis is that it is in fact cultural differences in socialization that lead to both different levels of diagnosis and different outcomes by gender. A good summary of research is here: http://sfari.org/news-and-opinion/news/2014/autis…
To add another perspective to the other replier… I do hate to complicate things, but there is no solid consensus as to the idea of a ‘male’ brain and a ‘female’ brain existing; it’s debated as to whether certain differences actually exist, and definitely as to whether they make any difference in functioning. It’s a theory, and as such there is some evidence put forward to support it, but the opposite theory exists too and also has evidence. A huge part of this has been to do with everyone arguing over ‘what to do’ with trans people, as research on this in that area has proven largely unrepeateable and methodologically unsound.
Also, if women who have those neurological differences display different attributes and the attributes used for diagnosis are based off how men typically present them- definitely a strong working theory according to the last decade’s research- it’s reasonable to bring up the fact that it often goes unnoticed in women. Women also tend to be diagnosed later in life, which is probably that factor coming into play. There’s been a lot of recent debate and discussion about underdiagnosis and later diagnosis in women and it’s by no means solid or resolved.
Yours, someone who fits this profile who may-or-may-not be a late-diagnosis case and is currently panicking enormously over this fact and has done more research than is probably healthy, hah.
DROPS IN THROUGH THE CEILING WITH BOOK RECS.
Changeling, by Delia Sherman, has a protagonist who’s a changeling (the stolen human child) in a faeryified version of New York; over the course of the story, the changeling meets her faery counterpart living in the human world, who is clearly, visibly autistic. There are obviously a lot of problems with the idea of autistic people as “inhuman”; the trope dates back to medieval times, when disabled/neuroatypical children of all types were thought to be changelings. Recced with that caveat.
Al Capone Does My Shirts and its sequel Al Capone Shines My Shoes, by Gennifer Choldenko, have an autistic girl living in the mid-1930s; she’s the protagonist’s older sister, and a lot of the book deals with the family’s struggle to find care for her (i.e., to prevent her being sent to a 1930s-era mental hospital). Choldenko’s real-life sister Gina is also autistic. Her upcoming novel Chasing Secrets, set in San Francisco in 1900, also features an autistic character (this time an adult woman, a maid).
This is – not as many book recs as I would like to give, and this in no way proves that the depiction of autism in media isn’t male-centric; it absolutely is male-centric, and god knows it ought to be about a hundred times better. I have a special affection for Gennifer Choldenko, though, and wanted to rec these three books.
Thank you! I’ve seen the title Al Capone Does My Shirts but thought it was something totally different. I’ll check it out!
My I offer my opinion on Al Capone Does My Shirts as an actually autistic teenage girl? Because I found it to be a really disrespectful portrayal: first because the fact the she’s not really a character, just a plot point for her younger neurotypical brother to be embarrassed about. The narrative doesn’t treat her as a real character, which I guess could be because it’s a period piece, but you can write a period piece about an autistic person without denying them their humanity by confronting those attitudes via the narrative. A much better alternative is Viral Nation by Shuanta Grimes. There are still some issues but she the main character is an autistic teenage girl who is 1: not portrayed as a burden or a tragedy, 2: has agency in her own story, and 3: unless I’m misremembering, the story is in her POV. Yes it’s distopian YA but we don’t really get stories about ourselves and it’s enjoyable, and while still gross in some aspects, less gross than most.
I can’t figure out how to edit this oops: *May, not my, was the intended word there
One more book featuring an autistic female character is Confessions of an Ugly Stepsister by Gregory Maguire (yes, THAT Gregory Maguire, if you’ve read or seen Wicked). It’s possible that she, the character, has something other than a form of autism — it’s never elaborated upon — and she’s sort of a secondary character, but still. I recommend the book no matter what, too, because I feel like it’s one of Maguire’s best.
Yes, it’s problematic… but the changeling thing is something I’ve always identified heavily with. The feeling of being alien or faery or whatever is… dangerous, but compelling.
I do have a story idea about a diagnosed Autistic girl finding out that changelings are a real thing… and crying bitterly when she finds out she isn’t one, but her NT friend is.
_Ten Ghost_ by Adam Thaxton [ http://www.amazon.com/Ten-Ghost-Adam-J-Thaxton/dp/0983225001 ] is the book that made me realize I am autistic. I didn’t know that the main character -a female- was supposed to be a representation of what it’s like to be autistic while i was reading it, but i had never so strongly identified with any character before -and I read voraciously- so when my friend told me that’s what it was about, it was like a light bulb turning on over my head it was such an “ah hah!” moment. Also, it’s an absolutely beautiful book that’s worth the read regardless of whether you’re interested in the autism angle.
Diane Kruger’s character in The Bridge was high-functioning. It’s pretty uneven in how it’s portrayed, although after the premiere they at least got more input from the autistic community.
I haven’t watched the US ‘The Bridge’ but I thought the original Swedish/Danish ‘The Bridge’ was really good at showing an autistic female character, Saga (I am neurotypical though so I could be wrong).
I’ve always read Temperance Brennan in Bones as autistic in that she’s not just “loveably quirky” but has difficulty reading people’s inner landscapes that leads to genuine issues with friends, partner, etc.
I did, too, but after the whole Zach thing… *shudders* And the psychologists! The actual, improbably successful psychologists! Who never say a word! It makes me gnash my teeth, it really does.
Bones and I are no longer on speaking terms.
Temple Grandin.
http://www.imdb.com/title/tt1278469/
There’s one in a season 2 episode of Miss Fisher’s Murder Mysteries, and she is LOVELY.
Mozart and the Whale
Admittedly it has a male main character, but he and the girl he’s dating are both on the spectrum.
I haven’t watched it in years so I don’t know how well it holds up. I think I’m definitely due for a rematch.
Ugh, I want to reach through time and box that college boyfriend’s ears. Casually hand-waving away as “cute” what follows after “I have something important to tell you”–that is an undercover jerk move if I ever saw one.
Ugh, yes. I’m mad AT HIM.
The read I got was this was the rush of Young Love, and its thought that it could conquer all. My take was he’d never had a relationship with an autistic person, so himself was needing to have behavior explained to him, something he thought he knew.
Hey sister! Spectrum girl erasure is such a pain. It’s definitely true that if you’re a conventionally pretty girl people just assume that you have awesome social skills and make excuses for your weird behavior. It’s as if people actually consider conventional attractiveness to *be* a social skill, and if you’ve got that figured out you must be in possession of ninja level talent across the rest of the social skillset as well. I feel like my whole life I have been inadvertently sending signals that people interpreted in ways I couldn’t understand or control, and it’s only as I’ve become an adult that I’ve realized that was what was happening.
” Spectrum girl erasure is such a pain”
It’s also an excellent name for a novel about experiences of women on the spectrum.
“I feel like my whole life I have been inadvertently sending signals that people interpreted in ways I couldn’t understand or control, and it’s only as I’ve become an adult that I’ve realized that was what was happening.”
OMG, yes! That’s it exactly! I’m almost 30 and it’s a crap shoot whether i realize it even now. In fact, it’s only later with much reflection (or rumination sometimes) that I can identify what I did “wrong” to get such a bad/unexpected/confusing reaction.
Oh there’s lots of stuff I’m still missing for sure (I’m also almost 30). I’m just now starting to decipher things that have bugged me since middle school. I reckon I’ll be about 15-20 years behind for my whole life, but I think social skills development kind of goes asymptotic as you hit middle age? I don’t feel like 50-year-olds I meet tend to be obviously more socially capable than 40-year-olds, for instance, whereas I would definitely say that there’s a huge and noticeable different between 20 and 30. So my hope is that by the time I’m like 60 I’ll be totally on top of all the social lessons I learned when I was 40 and I basically will be the social ninja people have assuming I was since I was 8.
THERE IS HOPE FOR US YET
Thanks for this excellent post.
It would be nice to see more examples in the media of any autistic characters, especially women. With the caveat that I am neurotypical, I think it would be cool if some characters continued to be quirky and lovable while also 1) being labeled as autistic and 2) actually having to deal with the complexities of a neurological condition. I can’t think of any characters that fit the Jess description while being explicitly associated with autism or any neurological atypicality. So many characters– Zooey’s sister Emily on Bones comes to mind– have this sort of secret-subtext- autism status.
Wouldn’t it be great to have a female Sherlock*? I don’t know if the subtext is that he’s on the spectrum – he certainly always struck me as having many autistic characteristics – but it would be refreshing to see a woman who’s brilliant, difficult, socially unaccomplished, and worthy of the audience’s respect.
*I refer, as I assume the Toasties will expect, to the BBC/Cumberbatch Sherlock, to my mind the only one worth watching. Whatever Jonny Lee Miller is doing on CBS is an appalling, meager imitation.
FINALLY SOMEONE GIVES ELEMENTARY THE MILD BASHING IT DESERVES.
The main character in The Bletchley Circle appears to be on the spectrum, although it is never explicitly stated. She’s brilliant, but also a loving wife and mother, which makes a nice change.
I have a friend who’s autistic and she says Tina Belcher on Bob’s Burgers is meant to be (and I think she said the show’s writers have confirmed that they wrote her that way.)
GET THEE TO THE FANFIC!
The protagonist of Laurie R. King’s Mary Russell books may somewhat meet these criteria. And, at any rate, the books would probably be highly entertaining for most any Holmes fan.
I read that Bones is high functioning autistic but the studio didn’t want to label the condition. Sandra Bullock was eccentric in “All About Steve.” It’s a Razzie award winner but I love the movie.
Thanks for sharing your perspective.
Thank you for this wonderfully written piece.
Thank you! This was beautiful and painful and warming and frustrating, I hope you write more here!
Thank you so much everyone for the lovely comments. The college boyfriend is actually one of my closest friends now and has since apologised for misunderstanding me, we were very young and I think it was something he couldn’t grasp at that time. x
Not being friends with him would have been fine, but that is nice to hear that he learned and was able to grow.
Great piece!
As a budding speech-language pathologist (I’m a clinical fellow–still working on my license!), I really appreciated this. I work with little munchkins, nobody your age, but I totally know what you mean about the assumed “maleness” of autism. Thanks so much for sharing! =)
Aaaah I was thinking over these last weeks of how little I’d seen any writing from spectrum womens’ perspectives!!! I had thought about asking the women I knew about interviews and dialogues and the like, but it always felt like it would be better to just have someone directly writing about themselves. Marvelous!!!
I strongly identified with this, btw! As much as a boy elsewhere on the spectrum can. So often I feel like a heavy-handed creature amongst so many delicate things. Having to ask people if there’s a problem when I can’t tell if one exists is second nature to me now. Half the time it creates one.
You might like to check out the Autism Women’s Network, from whose Facebook page I came by the piece.
Today I learned what the NLD diagnosis I got at 11 actually means. I…always assumed it had something to do with my poor skills in math? After the initial assessment, it was not something my parents ever brought up again.
I am pretty fucking weird and do have trouble connecting with people, so. This is kind of relieving.
Aside from any personal revelations, this was also just well written and very interesting. Thank you 🙂
I have a fair few female friends on the spectrum and parental denial or avoidance seems to be a common experience among them 🙁 all the more reason for spectrum women to be visible! They can forge community with each other.
I never cease to be amazed by the glut of wonderful writing and diverse perspectives on The Toast.
Thank you so much for sharing your story. It was moving and eye-opening, and echoing everyone else hoping that you continue to write here!
Thank you for this!
I’m always super grateful to read another woman’s description of experiences on the spectrum, especially if it’s not necessarily blindingly obvious. I identify SO MUCH with these descriptions, and it’s like “oh, yes, that was my experience!” but the only dx I ever got was “well, it’s not OCD enough to be OCD, and she’s got serious sensory issues, but it’s not a full integration disorder” when I was 8. I did have a couple therapists suggest ASD as being very fitting when I was in my early twenties, but by then my parents couldn’t see any point in formal testing, and it was too expensive, so I don’t know if I’ll ever know for sure.
So yes, thanks for posting this and letting me realize that I’m not necessarily the incompetent weirdo I think I am. 🙂
Some other titles with female characters who are on the spectrum: How to Be Human: Diary of an Autistic Girl by Florida Frenz; My Name is Mina by David Almond; The Klaatu Diskos series by Pete Hautman.
As a girl who was diagnosed with NLD at 14 – thanks for writing this. It struck a huge chord, especially the fact that you have trouble identifying anger as well! When I was still living at home I would ask my mom like five times a day if she was angry with me. I was terribly awkward in high school (the crisp story rings so true, omg) but I learned how to manage a little better during college. Again, thank you!
Did any of those bitches fall for your pissy crisps ruse? I do hope so!
“It’s still difficult to tell someone who sees you as normal that you are autistic. There’s a feeling of coming out, of revealing something.”
Yes. I’ve dealt with depression/anxiety/panic disorders since I was twelve (which have now been grouped together into a bipolar 2 diagnosis), but I’m a naturally very cheery person. When I have to tell people what’s ‘wrong’ with me, it is always, always, terrifying and I am always certain I will lose them. I’ve always felt weird framing it as a “coming out,” but that is exactly what it feels like.
What a great article. My boyfriend of the past three years has autism and it’s taken a while for both of us to find a way of communicating that both fulfills me and is comfortable for him. I know firsthand how difficult those with autism have it in the wider world and both he and you are dealing with it admirably. Clearly stating how I feel is the only way we can really move forward day by day and honestly it’s been the best relationship I’ve ever had!
I almost felt like crying on reading this.
I don’t have autism, but I do have a lot of problems reading body language, and I try to ask people to explain what they’re feeling or what they want and they just get more and more angry with me, and I end up losing people I care about.
That’s what bothers me the most – the fact that other people just don’t have consideration.
I am so glad that you wrote this. I’m almost crying right now.
I have never felt part of the autistic community because of my ability to pass as neurotypical. I try to keep up on autism activism, but so much of it feels so… distant. It’s all important, I never doubt that, but it’s hard to feel like MY voice will ever actually be heard because I have never found another autistic remotely like myself. Like not even a little bit. All of the autistics I’ve met online have been closer to the non-verbal area of the spectrum and flap their hands and things that I have just never struggled with. All of the autistics I’ve met in person have been autistic men who were assholes and creeps. (Not because they were autistic, but because they didn’t view women as people. And this “all” refers to like 3 people.)
So I’ve never felt particularly welcome in the autistic community. I don’t think they tried to do it, but it always felt like autistics who can pass weren’t really welcome, that my voice didn’t apply.
So much of this feels so familiar that it hurts to read, but I am so glad I’ve read it. I finally don’t feel alone as an autistic. It has been so painful feeling like the only person like myself before I knew I was autistic, then finding that none of my fellow autistics were like myself at all. Being caught between two worlds and not fitting into either feels like torture.
You are the first autistic to ever make me feel like I wasn’t the only one.
Thank you.
what a lovely comment, thank you so much. I’m glad I made you feel not alone, it’s a weird kind of hinterland isn’t it?x
You’re definitely not alone! I’m on the spectrum as well. I’m so envious reading Hope’s story of how she was taken to see a specialist as a child. There was zero follow-up for me. My teachers and classmates wrote me off as weird… And unfortunately, my parents weren’t very engaged in my life, so there was no support there either. It took me into my 20s to realize that there was a name for my huge difficulties interacting with people, and that it was an actual condition. I still haven’t come out to anyone or gotten a formal diagnosis, though I’ve been considering it. By the way, have either of you been on WrongPlanet.net? I tried to join out of curiosity last weekend but wasn’t able to create an account. Is it worth joining?
I think the spectrum is really very diverse but it is so helpful to be able to share other people’s experiences and be able to compare. My son has been diagnosed on the spectrum, but he is also visually handicapped and suffers from severe epilepsy. He’s very different from most people on or off the spectrum, and while he is very verbal and commands quite a good vocabulary, his communication is very idiosyncratic; he mostly does not exchange with people. He almost never responds to a direct question or command. He rarely talks back and forth with people. He never, ever asks for anything directly; however, if he is hungry he will most often start a long monologue about how we can’t have lunch now, and all the delicious things we can’t eat. He doesn’t rock, flap hands, keen or do meltdowns, although he does occasionally decide he is going to stand stock still for a bit and neither move nor communicate (unless we are in the street and you say a car is coming; then he moves, so I know it isn’t his epilepsy). Oddly, he seems very attuned to other people’s emotions. He is terribly sensitive to my anger or anxiety and is otherwise just terribly interested in people and will channel what vision he has to read and mimic people’s facial expressions. As different as he is, when I read about other people’s experiences, particularly when the very high-functioning people speak out and offer insight, I am blown away by some of the similarities (Like many others, my son, for instance, can’t stand buttons or labels on his clothing; I have to buy him very soft clothes and carefully cut out all labels, otherwise he will tear his clothing apart, literally ripping it off his body). He is also very attached to his routine and he has an amazing memory. Sorry to go on and on about this, but there are things that people on the spectrum share (not all of them certainly) and when high-functioning people communicate about their experience, it is incredibly helpful for friends and family of those who are unable to express their feelings clearly. Thank you so much to Ms. Whitmore and to all of the people who have shared their experience in the comments. It makes me feel like my son and I are less alone in the world!
Wow, this really touched me!!! When I was about 10 or 11 my younger brother was diagnosed with autism. At the time of his diagnosis and doctor visits my dad said many times that the symptoms of autism sounded a lot like me, though I was never diagnosed; I made friends, I got good grades, and I seemed mostly well adjusted. No one knew what a struggle it was for me, that when I laughed at my friend who was crying it wasn’t because I thought her pain was funny, it was because I didn’t realize how unacceptable it was to express how funny I thought it looked. People didn’t (and still don’t) understand my awkward jokes, or my inability to understand jokes or innocent teasing. It’s so hard to step outside of my box of social rules that I simply have to be very blunt with people and explain how hard things are for me to understand sometimes. I remember vividly the first time I was validated by a close friend who worked with people with autism that he always thought maybe I was on the spectrum – and it was oddly such a relief! Knowing other women who have gone through what I have is truly touching. Thank you!
Joining in on the solidarity. I was diagnosed Asperger’s Syndrome, but my mother was supportive even before she knew why I had so much trouble reading people and socializing; my diagnosis was mostly because my little brother was diagnosed as high-functioning autism and Mom pushed to have me evaluated as well, since the description matched me to a lesser extent.
Because I’d had all that care and self-awareness, I could compensate. I remember a friend who had met me in college expressing skepticism that I was anything more than ‘quirky’ or ‘a geek’. A mutual friend, who had known me in high school, chimed in that I was a lot better at social skills now and that if College Friend had met me in high school, she’d see how much I’d learned since then. My mother also noted that having a sister only a bit younger than me meant that I had someone to interact with even when I couldn’t figure out how to initiate social contact. (My sister was also the sort of kid who loved having someone she could ask to play with her, so I think that worked out for both of us.)
This is an interesting article and I have sometimes found myself in a similar situation to the author. I am mentally ill and have been for most of my adult life and have often found this difficult to share with potential partners. The worst response I have ever had was a few years back when a woman I was fond of, who I had met a few times for coffee in St Andrews, reacted pretty badly when I told her of my illness. She deleted me on facebook and when I tried to e-mail her, I received two e-mails from her mother saying if I contacted her daughter again she would tell the police. This greatly alarmed and upset me as I had done nothing wrong and was always civil and respectful to the woman in question. Luckily this has never happened to me again and my present partner is much more understanding and does not judge me solely on the basis of my disability.
This was a beautiful posting, and so valuable. We are in the process of helping our autistic child, and as I’ve started to learn what makes him the way he is, I’ve found myself very suddenly questioning where my wife’s problems might come from; as people have told me about autism in girls and women and how it differs, I’ve learned maybe why we argue, why she doesn’t understand me, why she spends her life so frustrated and angry, and why I find myself thinking “How the hell can you not know…?”
I have no idea where we’re going, or what to do, but at least I understand a little better what is happening, and can try not to blame her, or me, when things go wrong. We are who we are, and have to work with what we are. It’s us.
Thank you for a beautiful post that resonates so deeply for those of us caught between two worlds! I have a formal diagnosis that took years to get after wading through lots of co-morbid diagnoses that only explained away part of the larger problem. I call it fence-sitting because when you try to explain what exactly is your difficulty with a particular thing people always explain it away with “but you are so normal!, everyone feels like that sometimes or why must you want to have a condition so desperately?” And then, of course, the very next time you misread them or miss the obvious they scream, “What the $#@* is wrong with you?!?!?” I’ve been fence-sitting for 53 years now and it never seems to get any easier.
As an aspy kid. I feel your pain completely. I’ve spent many many years studying people and trying to teach myself body language. The fact that male and female ASD present differently in general has always made it hard for others to take me seriously when I say that I don’t understand.
I do like to think of myself as ‘charmingly awkward’ (whether this is true or not is highly debatable lol). Most people laugh off my in intensity and my inability to understand illogical things. My friends and my partner all accept me for who I am. However like most other aspy’s. I’m seen more as ‘quirky’, which is fine, until I say or do something that is inappropriate. When people assume you to be merely quirky, they don’t take into account that your social skills are seriously flawed and that you genuinely don’t realise that being truthful can be seen as offensive. This problem is compounded when you are intellectually intelligent. People fail to realise that there is a different between intellectual intelligence and social intelligence.
There is nothing wrong with someone thinking your awkwardness is endearing, but people really need to start to realise that us aspy’s etc. aren’t jerks – we are merely people battling every single day to communicate effectively.
Not only that though, it’s not just that we are socially inept – it’s that we see honestly as good. We don’t WANT to have to read your body language to see your words aren’t truthful, we don’t WANT you to say it’s fine and expect us to know it’s not, we don’t WANT to lie, we don’t WANT to hold our tongues, we see that as a negative thing. We understand that the rest of society sees white lies and omitting truths to be common courtesy. But we don’t. We don’t feel courteous or kind when we follow etiquette – we feel like frauds!
Thank you so much for writing and sharing this. As a fellow “aspergirl”, who’s pretty good (practiced) at pretending to be “normal” (at least for limited periods of time) i can totally relate. You speak to so much of my own truth and experiences, which is why reading your words made my heart beat quicker 🙂
Thank you again–and you’re an amazing writer, by the way!
Colleen
The protagonist of Laurie R. King's Mary Russell books may somewhat meet these criteria. And, at any rate, the books would probably be highly entertaining for most any Holmes fan.