Wednesday, September 9, 2009

Life as an Aspergian female - a story I had to share

I’d like to share a moving story of what it’s like to have Asperger’s from the female point of view. I’ve always known Asperger’s manifests itself differently in girls than in guys. Yesterday I received this beautifully written essay, and I just had to share it with you. The writer wants to remain anonymous but she’s an Aspergian female, about my age, living out West. Her story is 5,500 words so I’ve broken this into three parts. Here is installment #1 . . .

*

Everybody says Asperger's' main symptom is a lack of empathy but I don't think that's true. Women exhibit differently from men. I'm sure conditioning has a lot to do with it but also women are predisposed from birth to be more empathic I think. I know I cry at the news very often. So I wanted to look at this and other characteristics to get clear on just what I can claim as mine and what just doesn't belong.

Empathy -- I'm extremely empathic when it comes to the underdog, animals, children, the poor, the starving, etc. I have no sympathy whatsoever for the obese. Maybe that's from being bullied by my huge family members I don't know. Probably contributed. But for me it symbolizes greed and selfishness at the expense of another. After all, you don't get fat from veggies, you get fat from the flesh and mother's milk of another. Taking what doesn't belong to you. Taking more than your share. Taking more than giving. I have issues regarding fat. I admit it. Try not to hate me for it. I'm just being honest. Which brings me to the next subject.

Honesty -- Aspies are incapable of telling lies. We don't play the game socially. We don't give insincere compliments. If you're getting a compliment from an Aspie, you can count on the fact that it is truly the way they feel. Which makes it very difficult in society because society functions almost solely on lies. Maybe I'm too arrogant to ever allow anyone to make me feel like I have to pretend in order to be good enough for them. I am who I am and if you don't like it, you can go pound sand. :D I also find it extremely tedious to have to decipher every communication from someone to ferret out the truth. It's just too much trouble. I'd rather hang with animals. They're not so tedious.

Speaking Style -- Aspergians tend to download data onto you rather than have a 2 way conversation. That's why I like to write. I hate being interrupted yet I interrupt others constantly. I get excited and I want to share. People have accused me of always trying to turn the conversation back on myself. But that's not how it is at all. I'm trying to connect. Trying to show that I get you, I know what you are talking about. Me too, me too! is what I'm really saying. It's a hand extended in fellowship. But since it doesn't come across that way to NTs (neuro-typicals) that hand extended in friendship is always rejected, usually slapped. After awhile you just stop extending it. The speech is also quite pedantic. Well you can see that's true. They call us "The Little Professors". It can come across as precocious, especially from a child. And since obsession with one subject is usually what you want to talk about, you come across preachy and pedantic. We all know what my obsession is. Animals. :D I can't tell you how many times people, bosses even, have made fun of me calling me Mr Howell (from Gilligan's Island) or something. I always felt so perplexed at why they would turn on me like that out of the blue. If you don't value the info I'm so generously sharing, that's fine, but to ridicule me over it just comes across like bullying to me. Which leads me to the next point...

Teasing -- We don't get it. It's so obviously laced with an ugly intent. You can feel the undercurrent pulling you down. Why are you making fun of me? I don't understand. I thought you liked me. I like you. How can you not like someone who likes you? See? It's very painful. Now I have a great sense of humor. And if there's really love behind pointing an eccentricity out, I'll laugh right along side you. But 99.9% of the time, teasing is a power play designed to put you down and the teaser up. It always feels like a betrayal. My family teased me mercilessly. I laughed but I felt the knife in my back.

Obsessions -- I go very intensely into one or two topics at a time. Then when I'm satisfied, I'll move on to another one. These obsessions last years, decades. And while I'm focused on it, that's all I want to do, think , breathe, talk about. Others do not appreciate this quality. Who wants to listen to some bore drone on and on and on about the same thing every single time you talk to them? The phone stops ringing. Loneliness ensues. After awhile, you learn to prefer solitude. I hate gossip anyway. Hate it. And most people want to talk about stupid stuff like clothes and make-up and boys. (big yawn!) Why is everyone so obsessed with their images and their penises? This is something that makes no sense to me at all whatsoever. It's infantile, which brings me to...

Age -- Aspies are age-inappropriate. We are childlike and innocent and naive, even when having experienced many harsh experiences. It's a childlike innocence that pervades our entire being. What ends up happening is that people either treat you like dirt and make fun of you, or if they're trying to be "nice", they'll talk down to you as though you were mentally challenged. I've felt like I was going to be pat on the top of my head like a puppy dog before. I may be childLIKE but that doesn't mean I'm childISH. In fact, usually Aspies have...

Very High IQs -- Mine is 165. Einstein was an Aspie and I think his IQ was 172. I'm not sure. When I was in 1st Grade at a very progressive private Catholic school run by nuns right off the boat from Ireland, I had the highest IQ in the whole school which went through the 8th grade. The nuns wrote off my eccentricities as the sign of a genius. This did not make me any friends. It appears that the biggest crime in America, for a woman anyway, is to be intelligent. I was supposed to talk about clothes and make-up and boys. ?? Instead I wanted to talk about death and truth and Alice Cooper. :D My favorite nun, Sister Regina, actually put a poster of Alice and his snake up in the music room, sandwiched in between Mozart and Beethoven. God I loved her. She was my saving grace. Once, in choir, I got what I call the whooshes down my spine so intensely that my head kept whipping back. I broke from the group to ask her what it was. She got on her knees to meet me head on and looked deeply in my eyes and said just one word, "Grace." I'll never forget her.

Clumsiness -- Well I have bruises and scars over my entire body. :D I always thought it was from being a dancer. The joke is that dancers can dance with utmost elegance yet can't cross a room without bumping into something. I still think it's not my fault. Hallways are way too narrow. Shower stalls are ridiculous. I'm 5'2 and 100 lbs and I can't wash my hair without bruising my elbows. Stupid.

Language -- We are little professors with great vocabularies, perfect grammar, and incredible diction. But we use words in different combinations than others might. Our play on words is often not understood by anyone but ourselves. We may pronounce words differently than others and insist our way is the correct way. For me the first word that comes to mind is vegan. People say Vee gun. There's no double e, no ea. Where did they get veegan? I say vay gun. I'm vegan, vaygun. That's the right way and that's that. We rarely succumb to outside pressure if it doesn't make any sense to us. Also there's a Tourette's kind of way we blurt out what we really think and feel. I don't apologize for that. I'm not here to serve your ego. I'm here to serve Truth (up swell in dramatic music here). I wish more people were forthcoming and told the truth. I get very confused over what I see as a discrepancy over what I'm hearing you say and what my brain is telling me you mean. It's very time-consuming trying to figure all that out. We also have a tendency to curse. :D This I feel is pretty clear and needs no explanation. ;)

Eye Contact -- They say we can't make eye contact. I feel I do but have been accused of not before so... ?? I know when I'm downloading data, as in talking AT you in conversation, I look at the floor or a distant inanimate object. It's just because I can't receive data from your facial expressions AND download at the same time. I can make eye contact, it's sustaining it that's the problem. I think it makes us come across as conceited and arrogant and uncaring. Which couldn't be further from the truth. In reality, we are trying so hard to give you ALL that we have on that particular subject. It's a form of generosity. So the punishing rejection after such a generous outpouring hurts. It's bewildering. But I just gave you everything I've got. I tried to be accurate and thorough, ya know? It really hurts to be misunderstood all the time.

Sensitivities -- We are sensitive to noise, light, textures and smells. Meat-eaters smell like musky sweaty testicles to me. Sorry but it's true. It is tough in an elevator. Perfumes? Fuggetabout it! I can literally vomit from perfume. Obese people smell like cabbage to me. Rotten cabbage. It's too yeasty or something. Repulsive. Sorry. I love you guys that are in that boat I do. Try not to hate me for being so blunt. I really can't help it. If it makes you feel any better I have terrible garlic breath and absolutely no breasts so... :) Light? Cannot handle the sun at all. I wear a hat and sunglasses just to go to the mailbox. All the lines on my face are from squinting in the bright Florida sun as a child. I had wrinkles in 1st grade! Seriously. Sounds? I can hear electricity in the walls. I have to unplug everything in the house sometimes just to get to sleep. I can even hear a motor-like hum in my head at night. I've read that that is the pineal gland revving up to release serotonin or something. People think I'm insane but others experience this too so... Textures? Cannot stand, STAND, seams!! Why in God's name do idiots use fishing line to sew clothing? That and these 2 inch seams are asinine. Period. So I wear my clothes inside out. I live in cotton flannel jamas inside out. I even go to the store like this. I don't care. I'm not trying to impress anyone. It doesn't matter how expensive the clothes are. Let's face it, they're all made in the same sweat shops so high prices are for fools to pay. These are the biggest issues that affect my day to day sense of well-being the most. That and the fact that I cannot, to save my life, get a good night's sleep.

Insomnia -- The brain simply never stops. I can be laying in bed breathing like I'm asleep yet fully aware of everything going on around me. I know when the fridge cycles on or off, when a car goes by, when a dog barks even once. I know where Sparkie is by the pitter patter of his little cutie feet. I am always aware.

Alcohol -- That's been my saving grace actually. Other Aspies feel the same. It allows me to let go of any social anxiety and interact with people in a fun way. Not so serious, not so intense. I also never get bombed because I always feel sober no matter how much I drink. So the extra alcohol only serves to make me sick as a dog. I envy those who can let go and dissolve into the stupor and make right fools of themselves. Oh I can make a fool of myself. I do it all the time. I'm just sober when I do it. No matter how many margaritas I've had. My body might feel it as in an unsteady gait but my head? Right there, fully aware, completely sober. It sucks. I could use a break from my brain. We do use alcohol to self medicate too though so it can be a problem. I drink close to a bottle of chardonnay a day and I have a liver disease from the bad blood I got in the hospital in '92. I really am playing Russian Roulette with that. Not very smart but life is so painful that, maybe I want to pass sooner rather than later.

*

I’ll be very interested in your thoughts. The author of this story will be reading, too, and I will pass any of her responses on through the comments . . . . Stay tuned for part 2 . . .

93 comments:

heatherenjoystheweather said...

Thank you so much for sharing this wonderful essay. I was truly moved by this young woman's words and I look forward to reading more.

Catana/Sylvie Mac said...

It's always interesting to read another person's take on their life with Asperger's, but their example doesn't necessarily have much relationship to mine or to the lives of other aspies. I'm like her at some points, very, very different at others. Male or female, the same rule applies -- we're all different. So I get tired of repeats of generalizations about how female aspies "present," and how we're "all" this or that. Her profile is *her* profile, period.

SewDragonDesigns Embroidery said...
This comment has been removed by the author.
BKI said...

wow... i'm even more convinced of my aspergian traits now. i cant wait to read the rest...

Kim Rossi Stagliano said...

This is an interesting look into her Asperger's, but I don't see anything unique to the female Aspergian here.

At the end of the day, it sounds as if her life has a great deal of struggle and difficulty because of her differences.

I have an Aspergian female friend in my town, I don't see a lot of similarities between the two women, bringing us back to the point that we're all unique, even in our uniqueness.

I wish this woman well - her message would be good for everyone to read or hear. Especially about teasing and bullying.

I'll look forward to part 2.

Rayann said...

loved it and cant wait to read the rest thankyou for sharing even though my aspergian 7 year old is a boy I see so much of him in this essay

John Elder Robison said...

Sylvie Mac . . . Being self-centered is an Asperger trait that is founded in neurology. The same dysfunction that makes us unable to read others makes us self absorbed.

It's not a bad thing, rather, it's a result of our oblivion to others which is at the heart of our difference.

That's quite possibly why she says that; it's not necessarily a generalization beyond herself even though it sounds that way.

SewDragonDesigns Embroidery said...

I can agree with several points of this. I think my way of telling people exactly what I think about their arguement is that I have learned to say.."Just playing devils advocate here"....and often its just really me expressing how I truly feel, but have learned that often people dont want to hear my bluntness actually..they just want a sounding board to play off of. So disguising it in that form is a way around for me.

And I think not being able to understand or find it appealing to be into boys and clothes, purses and shoes and make up is probably one of the reasons that as a woman, I think I am closer with guys. I have all boys as well, and I dont think if I had had a girl child who was prissy that I could relate to her in the least little bit. Sure my nails have paint on them now, but they are short, the paint is chipped, im wear a tshirt from the guys department that has comic book characters on it...i maybe have 10 pairs of shoes tops..and i never change my purse until the one im using falls apart from age. Cattiness, gossipy, and backstabbing bore me..and are pointless useless drivel. My mom bought me barbies...but i played with the guys and star wars toys..Leia was a much more complex woman to be than barbie ever would have been...

wittyenough said...

Thank you both for giving me some insight into my 11 year-old daughter. As well as I know her, I still don't speak Gwen well enough to get to what bothers her and help her through her troubles. It helps reading these blogs. I'm so glad you are out there.

SewDragonDesigns Embroidery said...

And I have learned to just shut up when I realize that I have over ran the conversation and started to make it sound like I am trying to "one up" everyone on a subject. It's hard to do sometimes. I actually was doing that last night on the phone with a friend. I had to step back and say "So how is work going?". Then again later so I asked him about his date.

Christen said...

Wow, this is powerful. I have a 7 y.o. daughter on the spectrum and a 14 y.o. nephew w/AS and some of the things this author describes sound just like them. It's hard to imagine them as adults and hard not to try to anticipate (and obsess over) what will be difficult or painful for them. My daughter constantly talks about herself and I it annoys me yet I know she doesn't intend to disregard other people's opinions but she just has a totally different perspective. Maybe she feels like this author, that she is generously sharing what is in her head and my efforts to change that sound mean and overly critical? And of course, I adore my child more than anything in the world so I'm willing to understand her point of view, but when she's only 7 she can't really share the insights that this author has about herself. Many interesting things for me to think about as a mom to a daughter who may be so similar to this woman one day. Thank you for sharing this!

BioMedMom said...

Thank you for sharing this essay...it's very informative. It wasn't until my son was diagnosed with high functioning autism at age 3 that I realized that my father is an Aspie. This revelation has corrected many misconceptions and has healed old wounds.

I'm looking forward to reading part II.

Kerry Izod said...

Hey, life can't get much tougher for an aspie when the marriage breaks down:( Been honest all my life, helped all I can and done the best I could. I'm 50 and I still don't get how ppl manipulate to the point that yr the bad guy. I know I don't deserve all this but it's true, pple suck the life out of you and then they wonder what happened to the person they used to know. Go figure!!

Kerry Izod said...

Nothing worse than an aspie that's been misunderstood and taken for granted. My 17 yr marriage is on the line for both reasons. Life sucks.

Catana/Sylvie Mac said...

"Sylvie Mac . . . Being self-centered is an Asperger trait that is founded in neurology. The same dysfunction that makes us unable to read others makes us self absorbed.

It's not a bad thing, rather, it's a result of our oblivion to others which is at the heart of our difference.

That's quite possibly why she says that; it's not necessarily a generalization beyond herself even though it sounds that way."

John, as a long-time student of psychology, and observer of the human condition, I have to say that the self-centeredness is a human characteristic, not an aspie characteristic. All humans generalize from themselves to others -- unless they've become aware of it and avoid it. But considering that aspies are also supposed to be so analytical, projecting one's own characteristics should rarely come up in aspie thinking. That it's just as prominent among aspies as among NTs means that analysis as a typical aspie characteristic is just one more generalization (or myth, as I prefer to think of it).

Library Mistress said...

"It really hurts to be misunderstood all the time" - and it hurts to be called selfish and greedy because of one's less-than-perfect physique. I do appreciate honesty, but this is just a generalisation you wouldn't want to experience yourself.

anindigorose said...
This comment has been removed by the author.
Blake said...

As the step-parent of two Aspergian boys, ages 15 & 11, and an Aspergian girl, aged 8, I notice the differences between them. My step-daughter at times seems to be "oversensitive", while the boys seem to be "emotionless". I read as much about Asperger Syndrome as I can get my hands on, and look forward to anything new. I look forward to reading more.

anindigorose said...

So, SO sorry for the lack of formating first time 'round. My bad!!

Let's talk about me! LOL


No, seriously. Let's do! My first reaction is SO very much one of the "Me, too!!" variety. I'm feeling
anxious. I *need* to express to you all how alike the author and I may be. *feeling guilty and stupid*


My second is of comradery. The author and I, and anyone with similar thoughts, are now acquainted. You may not know me from Adam, but in my world, we are friends. If we met, I would expect that, of course, you would want to hear *everything* about me, my life, my hurts, my loves, my hates, my animals. It is ironic that my honesty and warmth (yes, WARMTH), may engender a reaction similar to having been *vomited* upon by someone you just met. And yet, if you give me a look of bewilderment,
I will read that as my cue to vomit *again*. Because, apparently, you just didn't *get* how alike we really are the first time I shared...


My third reaction is one of shared pain. Deep, hurting, not-glossing-over-the-truth *pain*. Because we were betrayed. BETRAYED! Those who were put on God's earth to love us the *most*, to understand us, to *nurture* us...they betrayed us. Damn, that hurts. It causes terrific anxiety in me, having to try to figure out just *why* they don't love me, these people I wanted to love...


Thank you, dear author, for the truthful glimpse into your reality.


Lisa
*undiagnosed Aspergarian female of 42*

Lesia said...

Looking forward to Part II. I think we can all learn from this. Honesty and Integrity are what I see in this writing! Thank you! I have learned a lot to help me have a good relationship with my Nephew Max who has been recently diagnosed with Asperger's Syndrome. He is currently Obsessed with Garfield and Spounge Bob and his IQ is off the charts for his age too! Now I can understand his thought process a little better. He doesn't make eye contact much. But he does and when he does it is AMAZING! He is an amazing little boy and I will take all of this in and be a better Aunt for having read it. Thank you! Thank you! Thank you!

zeppo said...

My parents never got an official diagnosis for me. The school counselors however loved to bandy a lot of terms around: Sarah is autistic, hyper active, mentally retarded, obsessive compulsive, a sociopath.

At one point, to nullify my disruptive powers they made me sit in a refrigerator box with my desk with a little hole cut out so I could only see the teacher. It lasted just over a week. They finally decided it was a touch too humiliating to have me locked in my own private cell in the middle of a school room. I was devastated when they took it away as I had made up a little narrative about how it was reverse TV. I was inside the box receiving information from the outside world through a little screen and interpreting it all by myself without distraction. I had carefully drawn all the imaginary circuitry on the inside of the box walls with my special Mr. Sketchy markers that smelled like fruit.

Now I am an adult and experience has taught me to hide my symptoms just so I can get along with the normal folks in the world and hold down a job. The truth is, it is a lot of work for me so I really don't go out much.
The hilarious part of the story is that I came here following a link with the flickering promise of understanding and acceptance, even if it is across the internet and as much as I can know and feel exactly where this woman is coming from, I am now leaving with the overwhelming feeling that even among the outcasts I can find no refuge because I am fat.
So this just crystallizes a little more what I have always suspected - there is no place for me except for maybe for ornately decorated refrigerator boxes.

Helen said...

Hello there, your post today could NOT have come at a more opportune time.

My adult son, developmentally disabled (mild), has been engaged to a woman close to his age (both in 40's) who has Asperger's.

Engaged since January '09, she has called off the wedding scheduled in just five weeks and has asked my son to move his clothes, etc.

He is totally devastated and I am trying to help him pick up the pieces. (He has come back home.) According to his fiance, there were 'issues' she couldn't get beyond.

I must tell you that reading this open and honest post has been eye opening in so many ways. I thought I had done my research into Asperger's, but I needed to hear it from someone who lives with it.

Thank you.

Michelle O'Neil said...

Thank you for this heartfelt and honest post. I especially appreciated the part about eye contact. Looking forward to part II.

Lorri said...

Thank you for your insight! My daughter (11) has Asperger's. This was very helpful for me to read. I feel like many things noted, she struggles with too. It is nice to have it put into words since cannot yet explain it for herself. I am excited to read more!

Jay said...

The more I read the more concerned I become for my child - 14 male - recent dx ASD. How do I determine the correct way to deal with all of this......... Doctors in my opinion DO NOT HAVE A CLUE! Then there is this heridity issue - how do I figure this out? Or does it really matter.......

Kat said...

Very interesting. I see myself in so much of this except I'm currently obese. Was teased cruelly for it in school. Cruelly.

My AS increased the pain as I didn't know why people hated me so much for an external thing. I became anorexic and an exercise bulimic as a teen, but still found most people shallow and silly. I still didn't fit in, so I tried to take my own life. Sorry you feel such hatred for the obese. There are good and bad people in all "groups".

Being skinny as a rail only changed me on the outside and caused the same boys who used to make fun of me to pant and repetedly ask me out. I hated them for it. It also made me get sick a lot. I lived with a low grade temp and extreme fatigue for a decade. Seriously hurt my back in an anthletic endeavor and the weight has since crept back. I don't like being judged and rejected for what is on the inside OR the outside.

I was a tomboy for sure. Had my Barbies doing adventures like jumping off cliffs. Also loved knives and guns and rocks. However, as I became a teenager I developed an interest in makeup, clothing and fashion. I collect vintage patterns and buttons. My obsession I suppose. To me, they are art forms.

Childlike, yes. Empathic, yes...most of the time. High IQ...not so much. It's in the superior range. So much of my intelligence was in art and color. I could draw quite well, but had to copy from objects or photos. Not enough imagination to draw out of my head. I could copy a signature exactly, but never used it for anything bad...just fun.

In college I was pulled aside by one art professor for special work with color. I can look at two reds and tell you which has more green in it...when most would say they were identical reds.

I also spoke in complete complex sentences before age one. I used to doubt that, but my mom swears I did. Said my pediatrician used to sit me on his desk and just listen to me talk...but I didn't walk until I was 16 months old. Never very flexible. Always a little clumsy.

Anyhow, I look forward to more from this lady although I don't see a whole lot that makes her different from men with AS. It's still interesting and useful though.

cath c said...

thank you for postin gher thoughts, john.

i think i just figured out what i've been somewhat recognizing in my son in ME! Sometimes i put people off when i'm trying hard to connect with them. i'm extremely sense aware, like i have too many nerve endings in all my senses. i've never been able to sleep without being aware of the whole night around me and the 'motor running' behind my ears. I love big words and collecting knowledge, but i'm not quite as exact repeat as my son is when it comes to my oversharing.

she hasn't really stated anything i hadn't heard before, but it rang very true for me this time, rather than for my son.

Bernie Folan said...

Amazing clarity. Cried at the music part. I got shivers too. She needs to write a book. I take on board other commnts about not expecting this to be the "female aspergian experience." It's just a very interesting and honest account of her own experiences. Thank you.

John Elder Robison said...

Here are some responses from the author of this story:

First:

People have always commented on my sensitivity. To me it's like I don't have any skin. EVERYTHING gets right in. I forgot to mention the no skin part. :)

Second:

Please know I don't HATE anybody. I just hate the smell of fat. If I say I don't like your shoes, does it mean I don't like you? No. My friends will tell me when my breath stinks. I know they still love me. I would befriend any of these people, meat-eaters and the obese. That doesn't mean I'm not overwhelmed by body smells.

Man our culture is so twisted. There's a pink elephant (no pun intended) in the room and I'm not allowed to talk about it. Everyone's so busy promoting the idea that "fat is beautiful". Well tell it to your belabored knees, your heart, the animal carcasses clogging up your colon. I'm tired of all this pressure to like fat. I don't like fat, on my body or anyone else's. That does NOT mean I don't like YOU. Ya know what I mean? I feel bad that people are getting hurt by my words when that is not my intent. I'm not going to lie for them though. And withholding information is a lie of omission so.. I'm not gonna do it.

Also I was not a tomboy as a kid. I played with Barbies for a long time. Too long probably. It's just the way I played with them. I'd build elaborate spiral staircases out of my Dr Seuss books and then cover them with my Dad's white hankies so they looked more like those beautiful marble staircases in the Fred Astaire movies I loved so much. And then, using my Barbie and Ken dolls, I would reenact a scene from a movie over and over and over again for hours and hours. I found comfort in the repetition.

I just wanted to clarify those two points. I don't care what a person looks like, I care about the animals. And I am sensitive to smells. That's all I was trying to say.

I knew that subject would get a lot of heat. But I think it's time we all get honest about it. Fat is not beautiful. That's a lie. The people inside it are what's beautiful. :)

PS: You have really made my day!!!! Thank you so so so much. Most people seem to be getting something out of it and that makes me feel soooo good. :)

Third:

I feel sad for the people who think I would reject them because they are fat and/or eat meat. I never said that. I wouldn't do that. But I have to be honest about what it's like when you have a heightened sense of smell. Is everyone so PC that we can't even call it the way we see it anymore? I want to respond to them but I don't want to blow my cover, yet. I want to wait until the 3rd installment is out and see what they think then. I don't want to contaminate their responses ya know? I want the truth. But I will be commenting to these guys then OK?

Just so you know, I have never rejected anyone. Most of my friends are meat-eaters and a lot of them are overweight. They know how I feel. They just smile at my irreverence. And I think my friends value my honesty.

Anyway, too wordy, my heart goes out to the ones who feel rejected. I would never reject them. I just don't want to be in a crowded elevator on a hot day with people that smell bad to me. Am I a bad person for saying that?

Baloney said...

I truly appreciate any insight that anyone gives me into the feelings and perceptions of a person with Aspergers.
And to address something in the comments I just want to say this -
I'm so tired of trying to help people understand how my son's struggles ARE different from a NT.
It is different.
If you can't comprehend where the difference lies then there is a fundamental lack of an understanding of Aspergers.
I don't want to offend anyone but I felt the need to share that as a mother to a boy with AS.
Generalizations help others understand. In order to have compassion we must first try to understand.
Thanks for sharing this story.

Ray said...

To "Zeppo",

She was merely espousing things which she has issue with - overweight people being one of them. She doesn't hate you per se, it's just the weight issue which bugs her on some fundamental level. I'm an overweight Aspie myself, and I found her comments to be rather funny actually. I know it's painful to hear someone describe YOU without really knowing you, but it doesn't mean that she wouldn't like you as a person or a friend.

John, thank you for sharing the first part of her essay. :D

tidoubleguher said...

Thanks so much for sharing. My son was recently diagnosed as an Aspie (on my 39th birthday!). Throughout the discussion of the results, there were a lot of comments about how the apple did not fall far from the tree and questions about whether any of what they were saying resonated with me. The more I read about AS, the more I believe that I am an Aspie too. I kept reading the essay and saying "me too!"

I am looking forward to reading the rest of the essay.

Jex said...

Re: fat.
I don't think that's necessarily an apsie thing, I think everyone's got some issue with it in this society. Even if it's yourself that's obese.

Granted, I don't have the numbers and statistics, but it's hard to find someone with a positive self image who's overweight unless they're a black female. (I know that sounds racist, but I'm just going by what I've observed.)

It's just apsies are more honest and direct about our aversions, including obesity, if it's one of our peeves.

Justin said...

Very insightful. It makes me understand my oldest daughter a little more. She and I are both Aspies, and we butt heads a lot because we're so much alike. You'd think sharing this trait would make us work well together (at least I did), but I've learned that sometimes her way doesn't mesh with my way, and then the arguing starts. I will have to keep some of the basic points listed in this, and the two future posts, in my mind when me and my little one run into friction. Thank you for sharing this.

Gavin Bollard said...

A very interesting article. Thanks for posting. I can't say I agree with everything (obviously some of the generalisations don't apply to me). I might be aspie but I'm not female, so maybe I'm not qualified to disagree.

There were some really great examples in the article too and I could relate to large chunks of what you were saying.

In any case, my comments were too long to post here, so I've posted a review on my blog.

I'm really looking forward to part 2.

Samwick said...
This comment has been removed by the author.
Gavin Bollard said...

Samwick,

It doesn't really make sense to remove comments. They're part of history.

Many people will read a post and all the associated comments. They'll make their own mind up about the subject matter.

Removing your own comments simply reduces the ability for people to take your own point of view onboard.

There were generalisations in this story but there were some insightful revelations too.

Samwick said...
This comment has been removed by the author.
iquanyin said...

so far, everything she's said about herself--the how and why of her interactions--fits me to a tee. my brother was autistic, and i have a fair bit of experience with the spectrum, but only this very week (before reading this letter) did it occur to me that i too might be on the spectrum. and after a week of intensive reading (and of course, taking those quizzes), i'd say it's a very big yes.

explains a lot. a whole lot. (btw, when i first read your blog, i saw where you mentioned your son on fb and said friend him if one wanted. i think it was part of the article about his legal skirmish. so i sent him a request. sounds like a cool kid. both my sons are on fb too.)

love your blog!

anindigorose said...

Yikes! :)

Why not accept the "life as" segment as the *author's* reality?

Further, if one is an Aspie with a differing outlook, share you're own reality as a counterpoint. Much more interesting than listening to the mosquitoes whine, IMHO.

Speaking of massive generalizations: should my 5 and 7 y/o Aspies be held to a higher standard when describing their condition *now*, or may they wait until they've gotten their gigglies letting people know they've got burgers coming out of their respective asses?

Perhaps being self-centered is simply a trait of all human-kind...or even of all *life*. If infants, puppies, larvae, etc. weren't self-centered, they may not survive into adulthood. Many Aspies may be *perceived* as (whatever synonym you'd like to use in place of) self-centered.

The author is sharing her perception, picking and choosing her own synonyms. She's not writing The Asperger's Bible, is she? It's just an accounting of life, as she "sees" it. Many reading the blog, or John's book, are of an age that can (and readily will!!) take the best (meaning, what one personally, as an Aspie or otherwise, needs to hear in *that* moment of *their* reality) and leave the rest without pitching a fit. At least, not in front of *everyone*. LOL

I pitched a fit in front of my FIL last night. What did it get me? My needs spit-balled right back in my
face as invalid, that's what, in case you were wondering. Someone else's criticism is shaping MY public image. I'll definitely try to put a good spin on the ball before sending it back into someone else's court. Does that mean I'll get a neener-neener-neener? I hope so. I love me a good neener. :D

I'm looking forward to more segments of "life as",

she shrugged...

Samwick said...
This comment has been removed by the author.
John Elder Robison said...

Samwick, you are very quick to criticize "the Robison method." Where's your method? You have had some constructive things to say; why don't you write up your views and post them?

You say you don't like generalizations; let's hear your specifics . . .

anindigorose said...

Dear Anonymous Author,

edict - n. A decree or proclamation issued by an authority and having the force of law. 2. A formal pronouncement or command.

essay - n. A short literary composition on a single subject, usually presenting the personal view of the author.

Your words were introduced as a story and/or essay.

"Aspies are incapable of telling lies"

Is the above an edict, or may I interpret it as your personal view? Please let me know, because I am preparing to print it out, tear it to shreds, stomp on it, set it on fire, then watch it burn on the living room carpet...if it is an edict. If it is, rather, part of an essay, I'm cool with that.

Closer to home:
"Butt-smoke is invisible." says anonymous AS child.

I agreed. It is so, at least thus far...perhaps that will change once he reaches puberty??

"Butt-smoke is very stinky." says anonymous AS child.

I agree, for the most part. Sometimes it's not stinky. Even if it IS stinky, some may not notice a smell at all. To me it may smell bad while to my dogs, it is irresistible. To each, their own.

If anonymous AS child wants to write about butt-smoke, I shall allow it. Even if he wants to lay hands on paper and crayon to depict butt-smoke as a green cloud, which it is not, I'm cool with that.

she shrugs...

~Mama Skates~ said...

anxiously waiting for your/her next post!

John Elder Robison said...

I've just posted part two of her story on the blog. It's at http://jerobison.blogspot.com

Samwick said...
This comment has been removed by the author.
Chasmatazz said...

Writing hateful things about heavy people while saying, "don't hate me." It boggles the mind that someone who belongs to a group prone to discrimination and hatred based on ignorance and prejudice, would say such ignorant and hateful things about another group of people. And it boggles the mind that you allowed it, John. Did none of your readers comment on this? I couldn't finish reading the essay. I couldn't finish reading the comments either.

e said...

I would hate for someone in my life to read this article and come to any conclusions from it about me.
It would have been better if the author had used "I" statements.
For example :
I have Aspergers.
I think fat people smell.
I don't care what anyone thinks of me.
Written in this way, she avoids generalizations. If a reader is offended, it is clear that it is HER who is offensive and not all Aspie females. My impression is that she takes the approach that all Aspies are impulsively offensive, so it's ok that she is.
Forget political correctness. Whether one is an Aspie or an NT, mean people suck. As a woman with AS, I am painfully aware of how it feels to be treated meanly. The last thing I want is to be thought of as hurtful or mean.

abfh said...

Gah. This is nothing but ignorant, juvenile hate speech. "Fat people smell" sounds like something you'd hear on the middle school playground.

I recently wrote a post comparing prejudice against the obese to prejudice against autistics:

Our Big Fat Intolerant Society

LunaTec said...

Thank you guys so much for your honest comments. I sincerely appreciate your taking the time to do that. :)

There have been some misunderstandings but I have posted clarification in several places so I don't want to repeat myself too much. In short, I never said I hate fat people or that I was smarter than everyone. You can read more about where I'm coming from in the "coming out" letter John posted.

I agree that labels are confining and don't really tell the whole truth but, it's a place to start I guess, in general. ;) I agree that everyone is unique. Why can't society celebrate that? Why do so many expect you to be a certain way?

The only issue I ever have with anyone has to do with injustice and cruelty. I can take criticism. It's cruelty that hurts me to the core. Remember, I'm an animal rights activist. I see where all that "meat" and milk come from. I SEE the suffering and I FEEL it deeply. The fact that it's socially acceptable to engage in such cruelty, fills me with a pain that is so intense and so deep that I feel at times that alone will kill me. Seriously.

If I communicate in a sarcastic way it's because I enjoy irreverent humor. If we can't laugh at ourselves... we're doomed.

And I don't like it when people role-play with me. I like it when people show up authentically, warts and all. Talk to me straight. DON'T sugar coat your words. I'm an adult, even though I may act like a rebellious teenager sometimes. I can handle the truth. I assume everyone else can too. If they try.

None of us are perfect. All of us are a work in progress. But stifling my true feelings is not my idea of what I need to work on. Other people are very good at being tactful and diplomatic. I leave that to them. I'm not good at that. It feels dishonest to me.

I'm good at other things like feeling a passionate love for animals and a deep desire to protect them. :)

Anyway, I would LOVE to be friends with any and all of you that sincerely want to learn and share. You can friend me on FaceBook if you want. :) Thanks again for all your loving words. It means a lot to me.

Chasmatazz said...

I see lots of noise, LunaTec, but I don't see a retraction anywhere in any of your comments. Instead, you continue to defend your original statements.

It's your ignorant beliefs I take issue with. Although I have criticized your words as perpetuating hatred, I don't care whom you personally hate.

Chasmatazz said...

LunaTec wrote:
"Other people are very good at being tactful and diplomatic. I leave that to them. I'm not good at that. It feels dishonest to me."

I'm not asking you to be dishonest. I'm asking you to acknowledge that, first and foremost, whether it's a good thing or a bad thing to be heavy is a personal decision. Secondly, if even if we see being overweight as something undesirable, it's not a character flaw, as you suggest.

There are ways of honestly expressing ourselves that don't perpetuate hatred, ignorance, and prejudice.

I'm so tired of people hiding behind the excuse of being "honest."

Chasmatazz said...

Furthermore, harboring a belief and broadcasting it are two different things, (it's a lesson Alison Singer, the "Suicide Blonde" of Autism Speaks hasn't seemed to grasp). I daresay you wouldn't have reached such a large audience if John hadn't given you the platform, which is why I'm also holding him responsible for this.

iquanyin said...

great article. some ppl need to relax a bit, maybe write their own articles?

LunaTec said...

Chasmatazz, you sound so spiteful and dare I say? Jealous? I'm not trying to get an audience here. I'm just a woman who finally found the missing piece of the puzzle that explains a lot of my difficult life. And even if I were attempting to gain an audience. What's it to you?

This was a gift from John. All he did was present another person's point of view. He didn't say he agreed with it. I guess he's a helluva lot more open minded than you are. Why fault him for that?

You seem very hostile to me. I'm sorry if I hurt your pride, put a little crack in your ego identity. But maybe it's too confining in there. Maybe someone at some point was gonna come along and give you a little breathing room. Expand yourself a bit.

You don't have to agree. I enjoy intelligent debate. But petty put-downs serve no one. Stop being so mean! Listen, there are plenty of people out there who will tell you what you want to hear. I am not one of them. I tell the truth as I see it at that point in time. I never said THIS IS THE WAY IT IS, PERIOD. I said, this is the way it is FOR ME. That's really non-debatable. You're not me. So you really have no business telling me what to think, what to feel or how to communicate.

Now if you'd like to make some sincere suggestions, that's one thing. But to berate someone so vehemently? Well I wonder how you'd be face to face. It's easy to have courage when you can hide behind a fake name. Isn't it?

Chasmatazz said...

Ad hominem. Nice try.

LunaTec said...

You flatter yourself.
"..thou protest too much me thinks."

Chasmatazz said...

Your attempts to argue your point by psychoanalyzing me would be fallacious if you knew me. The fact that you have no clue what I'm about makes it laughable.

Anyway, I'm not here to engage in some sort of pissing contest. I honestly *wasn't* trying to tell you what to think or how to communicate. I really thought you would concede. I figured you had perhaps chosen your words poorly, or didn't realize the implications. The fact that you so adamantly refuse to change what you refer to as "what you think" makes it clear that you really do believe those things about heavy people.

I never personally attacked you, and although you're doing that to me, I refuse to respond in kind. And the closest I came to being petty was when I referred to your comments as "noise." Well, to use a defense you first used, that's what it was TO ME.

And I do regret that you have taken the brunt of this - to the point where you felt the need to get defensive. As I said, I also hold John responsible. He should have known better. And the fact that he's allowing you to take the brunt of what you refer to as my "hostility," without assuming responsibility, speaks volumes.

LunaTec, whatever you were trying to promote by allowing your essay to be published, it wasn't acceptance of people who are different from oneself.

And John, I'll continue to tune into your blog from time-to-time in the hopes that maybe it will become a positive voice for truth, but I'm not holding my breath.

Samwick said...
This comment has been removed by the author.
Pagan Sphinx said...

One really annoying thing that happens when anyone writes or talks about Asperger's is how everyone then thinks they have it too, when they don't.

I don't have Asperger's. My mate does and could care less that he does. We're both weird. And that's that.

LunaTec said...
This comment has been removed by the author.
LunaTec said...

Man guys leave John alone! He has done more for this community than anyone. Why are you being so aggressive? If I come across defensive it's because you're attacking. Shall I just lay down and let you walk all over me? End of discussion.

It's OK that you don't agree with my opinions. I still have the right to express them. With or without your approval. But to blame John for MY viewpoint just isn't fair. Leave him alone. He's just giving a forum to many different points of view. That's what you do when you have an open mind. You ALLOW.

Peace mon. Don't get yer panties in a twist. ;)

Chasmatazz said...

You still don't get it, Lunatec.

It's not easy being an obese or heavy person, for reasons directly related to their physical size. It's a physical impediment, and that's something they can either choose to live with, or try to change, with varying degrees of success, often due to factors beyond their control.

But there are other things they have no control over. Heavy people are afraid to leave their homes, and it's not just because it's physically difficult. It's because of the hatred they encounter, sometimes subtle, sometimes overt. They experience job discrimination, social isolation, etc., not because of what they can't do, but because others prevent them from having access to these things.

You say you mean no harm, but the incredibly insensitive words you wrote are harmful. You have written off a group of people as not important enough for you to consider their feelings. You've reinforced the general idea that it's OK to treat obese people as verbal punching bags.

Had this only been a private letter to a friend, it wouldn't be so bad, but you continue to defend your words, believing there is nothing wrong with broadcasting your hate speech for many people to read. This is inexcusable.

It's possible to counter hate speech by strongly objecting to it. Words can damage, but words, when placed alongside, can also mitigate the damage. I've tried to do this.

You call this an "attack" on you. It's all about you, isn't it?

I know you're a sensitive person. I'm sure you would never say hateful words to someone's face. Even though you claim the supreme privilege of never having to edit yourself, and the right to expess your opinions.

Most of us evolve beyond that very basic expression of sensitivity.

You're juvenile, profoundly clueless, and utterly self-centered.

And unfortunately many people will assume this is attributable to Asperger syndrome, especially since you seem to make the connection yourself. It's not. At most, your lack of development may be attributable to autistic isolation, or perhaps some other factor imposed upon us by a non-autistic world, but it's not intrinsic to autism.

And it's not like you're 24 years old.

And yes, John is also responsible. He may try to disassociate himself by saying it was someone else's opinion, but he published it. On his blog.

It's not just a controversial opinion. It's hate speech. The harm is in disseminating it.

An apology would definitely help mitigate the effect. I don't expect LunaTec to apologize, but John should. He apologized in a comment on someone else's blog. He should apologize here.

And unless it's an apology, I really don't care what else you have to say, LunaTec.

Alien Brain said...

I think the essay is an excellent, accurate representation of this woman's experience with Asperger's. Her intent in sharing the "fat" comment or any other sensitivities has no more malice than expressing her dislike for seams in clothing. It's exactly the same. My husband is Aspergian and I recognize him in paragraph after paragraph of her essay. To project any other motive for her comments other than a "data dump" of her life's experience is a mistake, in my opinion. Her essay is not about judgement of anyone, it's about her perception of the world around her. The essay and the comments are illuminating, and I find them very helpful.

LunaTec said...

Oh AlienBrain, thank you.

LunaTec said...

Chazz, it's not easy being thin. Do you know how many times I have lost a job because I was the only thin woman there? Do you have any idea how many times I have been bullied just because of MY size? How many times I've been ridiculed and rejected because I choose NOT to eat animals? I'm accused of being thin out of vanity. I don't even wear make-up. I get my clothes in the little boy's dept because vanity sizing doesn't include MY size. What used to be a size 0 is now more like a size 5.

It's a crime in this country to be a thin, smart, vegan female. It really is. So I understand your hurt. But you still don't understand my intent. Ask AlienBrain, she gets it. And so does the vast majority of people posting. But please let's stop talking about FAT!!!!!

You do realize that the diet industry is a huge money-maker. Apparently, I am not the only one who doesn't like FAT. F**K! ;)

LunaTec said...

typo -- "...so DO the vast majority of..." ,)

ananias said...

It's not so much that people seem clueless to me, just so unrealistically selfish that it's hard to believe they can't see the implications of their perspective. Gosh, if everyone tries to put themselves first all we'll ever get better at as a species is cutting places in line. But if everyone instead tried to be last, then the last thing anyone would ever need to worry about would be themselves.

Practically everything humans do seems backwards in this same way. Most of all religion. I think man invented god as a place holder for justice because we're so sickened by our own pettiness and greed while simultaneously too cowardly and lazy to even bother looking for ways to mitigate these character flaws. So we gave that job to a god. In fact, we've invented countless ways to justify these vestigial psychosis instead of looking for what could help us overcome them. It's a major annoyance for me and really takes the fun out of being sentient when the most common sight is the senseless waste created by this completely dysfunctional human avarice. (And I wouldn't be saying this if the wealthy could actually enjoy their wealth--usually it just imprisons or makes them nut sacks. But if no one at all is benefitting why are we so enamored with this economic strategy?)

The first time my wife (AlienBrain) pointed out that I probably have AS felt like the million other times someone gave me some inane structural reason to dismiss my perspective--like a justification for ignoring the semantics of my concerns because the only reason I was noticing this stuff is because I'm cognitively disfigured. What kind of cop out is that? Who cares? The stuff is still true for crying out loud! We really are literally drowning in the shallow opulence of our nearsighted ideologies and had better take note of it. That is what matters. But, like this woman's essay--the description was just too good to be dismissed and I realized I had this condition for the first time about a year ago. I'm 54. Up to that point I just thought I was broken--had way too much concern for stuff that just isn't relevant to my life so much as it is everyones.

But knowing there is a name, and a medical condition, (genuflect when you read that) is at this point just another annoyingly convenient way to dismiss what I'm saying. A total distraction that has nothing to do with anything. It's like giving a name to the condition of being left handed; it doesn't get you products designed to be used by lefties. And maybe that's what AS is--maybe we're using the wrong side of our brain for thinking: the right side. The bit that's smart because it had to be. (The left side seems to be about marketing what the right side decides.)

jypsy said...

"Think about all you say - Do not say all you think about"

Livinia Redlips said...

People used to ask me where my son was from...where he got his accent...

Barbara said...
This comment has been removed by the author.
Barbara said...

It's the portrait of a gifted Aspergian female human being, raised in the USA, and politically liberal.

Asperger's + Giftedness + Female + Human.

I think Ms. McCarthy would have a hard time dealing with conservative-minded neurotypical males from... Texas or Saudi Arabia.

I'm not here to judge women, fellow humans, liberals, Americans, Aspies or whatever, I found Ms. McCarthy's interesting enough for me to save it so I can read it again some other time.

What I don't approve is the following opinion expressed in the comments, that this was a portrait of a typical person with Asperger's. I think Ms. McCarthy is obviously not a typical Aspie, she knows that, I know that, and I don't know why some people seem to look the other way.

I find it hard to understand certain people's willingness to sell Asperger's like the ultimate gadget to have, some kind of fashion or to self-identify with the autistic community. There are very few autists who could express themselves like the smartest aspies (IQ-wise and/or socially) or non-aspies with mild autistic traits.

Autism is a serious condition, I'm sure few professionals would argue this point. It's not a lifestyle to wish for oneself, others, or one's children.

Have a good day.

Sparrow Rose said...

I don't mind the fat comments. I am not happy that I am obese so why would I expect someone else to think it's great. But it did hurt to be told that I'm fat because I exploit animals. I have been vegan for years. Yes, there are obese vegans.

Following a scrupulous diet, feeling like I was starving all the time, so it was hard to sleep, hard to concentrate. Exercising every day, religiously. I lost 50 pounds (putting me only 70 pounds over healthy weight) before I just couldn't stand the torture anymore and went back to eating enough food to not feel in agony every moment of the day. I've gained back 30 of those pounds even though I don't stuff myself and I walk five miles per day.

So it looks like I'm just fat and will be fat until I die fat. I'm not happy about it, but I live with it.

But I am horrified to realize that some people think I'm so fat because I eat animals and animal products. Because I don't! I don't feel so awful about what people think about me being fat because it's obvious that I'm fat, so think what you want. But I feel like hiding now that I know that people are seeing the fat and assuming I kill gentle baby cows and beautiful, feathered chickens and shining-scaled, swift fish in order to stay this way.

Gavin Bollard said...

SparrowRose,

Don't feel offended. Not everyone views fat people that way - and, IMHO vegans are just as much killers as the rest of us. They're just a bit more smug about their killings because they can't imagine that their victims have feelings.

ananias said...

Barbara, if it's any consolation, you've convinced me to stop mentioning it. I honestly don't know much about it and might, as you seem to suggest, mislead readers into having less concern or empathy for the condition by virtue of not perceiving me to be very impaired.

I'm glad you pointed it out.

Chasmatazz, I was most fascinated by your concerns. i get the feeling you could clearly describe the very best (or least distressing) attitude that an average or underweight person could have (or at least fake) when in the company of someone fat, or discussing the issue of obesity, etc. to most effectively dispel their related anxieties. For example, if LunaTec had said what she did, but in the context of being disappointed with herself for feeling that way, would you have still felt compelled to take issue?

I do think that this media is rather different that either conversation or letter writing, and that we lapse into using the cognitive machinery normally only used when speaking even though we're just typing, but forget that without all of the visual and audible meta-data (tone changes, pauses, gestures) our language can seem sharp or indifferent when the exact same words, if spoken the way their mind intended, would not seem offensive. I'm not sure if that's clear.

I know that if I'm angry with someone, I'm more apt to find a way to interpret their comments as derisive than I am the same words from someone I like.

Sparrow Rose said...

Gavin: insulting us vegans is supposed to make things better? All it does it tell me that I will be insulted from all sides and have nowhere to turn for solidarity or understanding.

Gavin Bollard said...

I'm not insulting vegans at all. I'm simply saying that they're no better and no worse than the rest of us in terms of consumption.

It's absolutely true that you will be insulted from all sides regardless of your choices and beliefs. That's life.

Just choose what you will and know that you can be secure in your own beliefs of self-worth. It doesn't matter what anyone else thinks of you. Only what you think of yourself.

Chasmatazz said...

Oh God. Gavin and LunaTec should start a club.

Chasmatazz said...

Ananias: yeah, you get me. More or less. Some things should never be broadcasted even within the context of being disappointed with oneself, such as wanting to drive off a bridge with your autistic child in the car.

dd said...

The first time I heard the admonition to "think before you speak" I was three. I always thought before I spoke, still do. I've been told in a derisive manner that I tell it like it is. I always wonder whats wrong with that, and what do they do? What is the evolutionary leap of having to wade through words for meaning? Kind of defeats the purpose of language. I've been asked why I care so much when others suffer? I don't know, but why don't they? I have never hit a living thing my entire life but have been fired because I had a conversation with a coworker that she should diet. I think they were referring to a conversation about her blouse and that she should dye it, its easy and the blouse would look better. You get used to it and keep on trekking.

dd said...

As to vegans - meat is food another animal has already used.

eve said...

I have to say, I was reading this article to get a better understanding of my friend who has aspergers, but I found it extremely rude.

Your comments about obese people (and meat eaters for that matter) are bigoted and offensive, and also just plain wrong. Sweaty testicles? Cabbage? Seriously?

For someone who has been misunderstood and discriminated against, I'm pretty appalled you would treat entire groups of people that way. Really lessens my desire to understand your disorder.

Erica said...

Thank you for this essay. I've never been diagnosed with Asperger's Syndrome. But, I think that I do have it. Many of the things she deals with every day are some of the same things that I deal with.

I'm very sensitive to light. I cannot go outside without my sunglasses. Smells bother me to no end. I can smell things that other people can't. I like what she said about sounds. Even when it's quiet for everyone else, I can still hear noise. I have never, in my 40 years of life, experienced total silence. And speaking of age... I don't feel 40. Sometimes I feel like I'm a kid. That can be a good thing but it bothers me quite a bit not feeling my age. The honesty part, I tell people that I am the most honest person I know. Some people just don't understand me because I am so honest.

Thanks again for this post. I can't wait to read more.

kasey said...

Part one of my comment:


First off I'd just like to say that I thoroughly enjoyed reading this (reading something from another female who has Asperger's made me quite happy) since it covered a number of things I myself experience.
However, I must admit that I think your conclusions are a little bias since not everyone who suffers from Asperger's exhibits empathy and such in the exact way you've described it. I think that's how you personally experience it all and I think that's your own little take on it all.

In relation to Empathy, I must admit that I am incredibly inept when it comes to empathy. It's not that I actively lack the capacity for it, more like I don't see why I should feel sorry for the old lady's whose shopping bag has just fell apart and her hips popped or something. I know that society dictates that I should feel empathy for her, it's not nice having a shopping bag snap on you, but I don't understand why I should really care about her when I don't know her and what has happened hasn't affected me. (This is an incredibly bad example by the way).
You say that you have no sympathy for obese people, but you do realise that empathy and sympathy are different things entirely? Empathy is the comprehension of feeling, sympathy is the actual relation of feelings. Basically, you empathise with a person when you can relate to their feelings about a matter, but you sympathise with a person when you can feel emotions for them and their current predicament.
I've found that people with Asperger's are perfectly capable at empathising with people and situations but some, such as myself, don't because we either see as a waste of our focus and time or a pointless social exercise done to make people feel better.

You then go on to speak about honesty. In relation to this matter I think you are in error. I lie. I lie quite well. In fact I can lie so well that when I went through a dark period no-one knew nor noticed - not even my parents - because I was so good at lying.
Insincere compliments... I've given those to my friends many times - probably more times than is strictly acceptable - so I think you're, once again, pointing out how YOU differ on that matter. I can function relatively well in social situations, I don't like being in social situations, but I can certainly function well enough to be able to interpret when I need to inject some humour or wrap things up.
I do agree on the animal thing though, animals are just so much easier to act around. They're all non-verbal, it's how you move and act and such that dictates what happens. I find it far easier and far more relaxing - even though it took me a while to learn 'body language'.

kasey said...

Part two of my comment:


You're are right, at least insofar as for me, about speaking styles. I have always had a preference for writing (can you tell :p) since when you write you can unload everything without any real interruption. However, there's always the problem of, people interrupting you when you're writing. I find this to be incredibly annoying and I hate time limits that don't allow me enough time to write out everything I want to write. It's... annoying to say the least.
I think you're being a little dramatic about saying the hand of friendship is always rejected; I have some NTs for friends and they don't reject me when I blather on about the effects of anti-psychotics on behaviour and such (psychology is my latest obsession). Indeed, they find it tiresome and annoying, but they don't actively tell me to bugger off and annoy someone else. However, I have known some people who have called me a 'know-it-all' and it can be frustrating as well as upsetting when that happens. But I don't hold it against people, they're not like me and so they don't understand what I'm trying to do. Most people give vague answers whilst I try to give them everything I can in as much detail as possible because that's the way I am. It's a difference and I accept that. Simple as.

Now onto another thing I, personally, disagree with; teasing. I 'get it' and I 'carry it out' with my friends. What you're talking about is the manipulative, unkind type of teasing that a bully lays upon their victim. There are two main types of teasing; there's 'joking' teasing - which is make a joke or an insult that has no 'bite' behind it (like someone saying you have bed hair or dress like a scruff but smiling and laughing 'kindly' at you whilst doing so.) - and then there's 'bullying' teasing - which is just plain mean. I've experienced both and, inadvertently, carried out both.
I can't say you're wrong because, for you personally, you're not. But for me and possibly for other people, you may be. It's all just our own little takes and such on the quirks of Asperger's really.

Obsessions... I can agree with you on basically everything you've wrote because I have, to date, had obsessions on things such as; sharks, cat, the Aztecs, the Mayans, British history, WW2, WW1, anatomy, brain structure, philosophy and most recently, psychology. I think it's one of the biggest things about people with Asperger's is that we fixate on something for a while, then we move on. Like the stages of development (damn Freud!).
I, personally, am not a fan of gossip but I do make a note to try and know something - mostly about my friends lives and such just in case I'm asked something or such (since I adore being the resident encyclopaedia of knowledge for my friends) - but I don't go out of my way to acquire it. And to ask you a question in response to you "Why is everyone so obsessed with their images and their penises?" couldn't one ask you "Why are you so obsessed some animals?" it's a two-way street on most things. The majority of people fixate on gossip and such. We focus on different things. That's all.

Now. Age-inappropriate. That's a big claim. There's a lot of people with Asperger's and I, myself, am not age-inappropriate. I have a friend with Asperger's who acts child-like and a brother with ADHD who has the mentality of a twelve-year-old. I don't condemn them for that but nor do I believe I behave like them. I myself am not childlike, innocent or naive. I, unfortunately, am incredibly world-wise and though I'd love to agree with you and say "yippeee! I'm a child!" I know, without a doubt, I am not.

kasey said...

Part three (the last!) of my comment:

And on to another thing! IQs! You're a little inaccurate on this. My friend, aforementioned, has a slightly above average IQ whereas mine is within the genius percentile (though said IQ test was carried out with almost no sleep and with verbal cues which I just fail at). There is no empirical evidence that suggests ALL people with Asperger's have high IQs though there is evidence to suggest that there's a higher ratio than NTs.

Clumsiness, I am mostly unaffected by - for which I am immensely grateful. I can sometimes have poor motor function and bad balance but for the most part, I can stand on thin wire and balance quite well (or at least I could before I did my knee in :p) and I can catch a ball being thrown at me with one hand.

My language is quite... aged. When I write answers to questions and such I have quite the tendency to use the sort of wording and diction that is reminiscent of the 1800s . It can be quite annoying when I'm 'corrected' by people who tell me that I can't word something like 'this' or say something like 'that' because I know for a fact that once, when English was actual words and not abbreviations, the manner in which I speak and write was perfectly normal. Times change but I prefer to keep my personal language the same.

I'm not a fan of eye contact, but I taught myself to look at people more - I paced myself until I could look at a person's face for more than two or three seconds, and then I moved to eyes. I still have slight problems with prolonged eye contact but for the most part I'm fine with it.

In relation to sensitivity, I think, once again, you're explaining your own problems and generalising them. I am hyper-sensitive to light (so much so that I have to wear sunglasses in the house when it's cloudy), smell (which is useful if you ever have to be blindfolded and have to identify food from smell), touch (I hate being touched, even the lightest touch is like being punched) and taste (spicy-foods and anything that's too hot or too cold, I just can't handle). But that's all me. Some people are fine with noise, other's aren't.
I don't like the feel of something on my skin, indeed there are some fabrics that I just HATE with a passion. Recently I bought a number of long-sleeved shirts which were made out of a material that I can't stand being in touch with my skin and they're nestled in my wardrobe because I can't even bare to touch them for more than a few seconds. It's ever so annoying.
Some materials I love so much, soft wool is adorable, and I can handle soft (over-washed) cotton, clothes but not new, stiff clothes. Certain shoes I can't handle at all, they feel too weird. And I rarely wear things on my hands, like bracelets and watches - indeed, I actually have a pocket watch because I can't wear watches!

With sleeping I never know when I'm awake and when I'm asleep, it's just a blur. I never feel rested when I awake and it's most likely because my brain is taking in sensory information and cataloguing it whilst my conscious slumbers (or tries to). The sound of electricity is my biggest problem, as well as the fact that - before I even go to sleep - I need absolute silence.

I can't say much on the matter of alcohol (being only just old enough to drink and such). But what I can say is that I have never been drunk, and I must admit I've tried. Most would expect a 1 litre bottle of Vodka to knock you out, but not me. Oh no, woe betide me if I ever experienced a bout of unconsciousness from drinking too much! It's like my brain doesn't compute the knowledge that Vodka should knock me on my arse with the rest of my body. And then I wake up without a hang-over, which is just bad. Incredibly so if you're up early for learning or driving somewhere and you're technically still drunk but aren't consciously aware of the fact.

Kasey :)

Kristie said...

Thank you for sharing! So looking forward to part II.

megs304 said...

Third time lucky, I so could have written this blog, and completely forgotten about it. How many times have I been chastised for inappropriate responses, wanting to join in, and getting left out, without really understanding why. It has all fallen into place, well within reason in such a short time. I read this, and it was like reading about my life. I have heard about Aspergers, but never understood it. I don't have trouble talking, and have always had an active social life, but obviously I had been 'self-medicating' not with alcohol, but activities, always having to do something different. Since having a family I have struggled and found it so hard, as I need to be responsible and stable for the kids, but I don't fit in with the other 'housewives'. I thought it was cause I was so much older, and had done so many other things, but it's not. I'm just not interested in the 'stuff' they want to talk about. I'm not interested in clothes, and things, I'd rather watch Big Ideas and Life Matters. I haven't read many of the other comments, but if you were hoping to enlighten and help one other person you have succeeded. Thank you for the struggle I will have in the near future, thank you for the arguments I will have with my family, and thank for allowing me to see that I am not ungrateful, crazy, and selfish despite the tears falling down my face now, I have a direction to search in, there is hope. There isn't anything elsle I could ask for.

Shells said...

I LOVED it. Now I LOVE her. Also an Aspie, I SO appreciate that she said what she thought. A lot of comments above would have her edit that. The point of the essay is to gain insight, not for her to squeeze it into a PC profile of an Aspie. This blog & Gavin's blog both seem to be trying to build a bridge, but you can't do that if you don't understand. For that, bluntness is required. I think in Gavin's comments to this blog he commented on smells (maybe touch) making him angry. Thank you to this author and Gavin. I don't think my husband believed that smells do that to me-or that touch could make me so angry before reading these. I also love animals and would rather be with them. But I cannot stand a cat or dog to lick me. It makes me want to punch them. Now, I have never punched an animal and I never will and still love them despite their lickity transgressions. Smells, especially perfumes, are felt down to my very core. They make my eyes burn from the head out and I want to vomit. How are you going to understand the intensity of these reactions we have if we don't describe them like they are? If you know that cleaner you use just an "itty bit" of still has the same effect as if you poured it into my mouth, maybe you won't use it EVER again. And when you do use it, I assume that you are out to destroy me.

Reading other comments-I remind myself that I have to be more tolerant of my daughter. We are both new to this road and so many things I've told her to get over it-shake it off- and that's not fair.

Me said...

Thank you for this blog more than I can express. You've given me a lot to think about in regards on how to express myself better and I actually sent this to my husband to read because i related to your entire blog - minus the fat comments.

lizzi said...

I don't think I'm aspie but can definitely identify with some of what has been written in this essay.

lizzi said...

I used to get told off for not looking at teachers too, critized for everything to do with looks by family, was fat, dieted then got annorexia, now really fat people make me feel sick when I see them overeating but I also feel sorry for them, I'm 5ft2 and just over 7stone. I hate some smells and will hold my breath, bad perfumes, bad body odour, bad unclean teeth, make me feel sick too.

00goddess said...

"After all, you don't get fat from veggies, you get fat from the flesh and mother's milk of another. Taking what doesn't belong to you. Taking more than your share. Taking more than giving."

This comment betrays terrible prejudice against fat people. None of these statements are based in fact or science. It sounds like the author has problems other than autism, for sure. I am disgusted by the bigotry expressed in those comments.

I object in general to the way this piece generalizes the author's experience as though it represents all of us. It does not.