06 September, 2011

what not existing means to me

Thinking of trying to post here more.

So I'll just say the social skills conversation makes me CRAZY*? It's become yet another of the things I can't even stand to talk about kind of like when someone tries to tell me I'm high-functioning and can self-advocate.

(*I don't EVER think it is a problem to talk about and examine language use but I'm not necessarily for having rules about it, so please don't comment and tell me why you don't think I should use the word crazy, I know why you think that and I think about it all the time.)

and today I flipped out at my friend just because he happened to say something about having social problems, in a kind of "well, you know, you and I are different this way" sort of tone. I think I said something like, "NO! I'm so fucking sick of people like you getting everything and being THE ONLY PEOPLE IN THE WORLD" which after I said that I was kind of like, shit, what am I talking about? what does that mean? why am I mad?

I am not really mad at my friend, or another Autistic friend at whom I blew up similarly about two weeks ago.

I'm mad because before I got to know other people with autism and DD, I thought I was some kind of Super Minority, in fact I did not consider myself to be on the autism spectrum at all, because I was told that "Asperger's" or "HFA" (the type of autism I was supposed to have, being a college student who could talk) was primarily about "lacking social skills" which apparently in a classic form meant not reading facial expressions (which I'd been tested on so I knew I could do it), insulting people by mistake, making people listen to speeches about your interests, not being polite, not knowing what people were feeling, and so on.

So I wasn't like this so I usually didn't consider myself to have ASD. In fact sometimes I knew things about people that other people didn't know.

At the same time, it was pretty clear I was kind of batshit* (in terms of how I processed life and how I felt sometimes) and I also had trouble with things related to friends that no one I knew had trouble with. For example when I was a first-year in college I got really attached to a friend named Clayton and wanted to spend time with him every day, so I would go sit outside his door. He would be happy to see me when he was there but he usually wasn't there so I'd just be sitting there reading and doing my homework and I HATED myself. I liked him so much that I wanted to see him all the time but I got so I hated everyone who lived on the same floor as him because I thought they were watching me and thinking how I wasn't normal and I was some kind of creepy stalker, and the next year when Clayton started living with the guy who had lived next door to him it took me a long time to stop hating him because I believed that he judged me.

The next year I had a friend named Noah who was a good writer but wanted to quit writing because it made him depressed. Noah spent a lot of time listening to me talk because he was a quiet person and it made me miserable because I felt that Noah and I didn't have an "equal" friendship, so I snuck onto Noah's computer and read pieces of his writing that he had forbidden me to ever read. It caused a huge problem in our friendship that I sometimes think has never gotten better, and it happened because I was trying to do what I thought was the right thing. (For some reason not one but two people who read my blog and who I attempted to be friends with have used this story to illuminate something about me they don't like. Thanks guys. I actually already feel terrible about it and find it hard to write about because it was an awful experience, AND I'm not the kind of person who would ever do something like that anymore, so it's not even a good example of whatever you don't like about me now.)

In the last year of high school and the first few years of college, I considered a girl named Lisa my best friend. I stopped considering her my best friend after a fight we had on the phone until four in the morning, my senior year, about ten months ago. A lot of our fight had to do with her feeling that I was mean and overly strident about anti-ableism, something she told me she "just [didn't] care about, I guess I should, because you're disabled, but I just don't." I could be wrong but I wonder if she thinks that identifying as disabled is some new thing I just invented/discovered and isn't who I really am. It's something that makes me feel oddly guilty and start questioning myself--because if Lisa doesn't remember me being disabled, then how is it even real? She's my oldest friend and should be the best judge of things that are phases or poses.

But it was a really long fight, and towards the end Lisa started talking about how when we were first becoming good friends (I was about 16 and she was about 15), whenever we had a conversation I would talk for a while and say, "I've been talking too much, now you talk." Lisa can be quiet with people early on, and it made her feel bad like I was constantly criticizing her for not talking in the way I thought was correct. She was saying that early on things from our friendship still affected the way she felt about me and it was hard to get out of resenting me for them.

Obviously, "I've been talking too much, now you talk," looks to me very much like sneaking on Noah's computer because I thought our friendship was too one-sided, and being upset that with Clayton I always sought him out. Whatever you call that problem, it was the biggest problem I've ever had in relating to other people.

Anyway, before I got to know other people with autism and DD, it was obvious to me that I had some disabled type problems like moving a bit differently and loving things too much and getting so frightened that I couldn't sleep or recognize words, AND I also considered myself to have "social problems" because this stuff with Noah, Clayton, and Lisa wasn't something that most people seemed to worry about. My social problems were not textbook autism problems, so I figured my autism must be very mild, but at the same time they seemed to wreck my life so much more than just being rude or not reading facial expressions. When I would interact with people who I imagined might be "autistic"--people who monologued a lot and weren't very sensitive--they seemed SO much happier and less distressed than I was and they seemed to pretty much have friends and not be killing themselves over whether they were calling their friend on the phone first or their friend was calling them. So how could I be more "high-functioning" than these people? My social life occasionally exploded into these awful periods where I was convinced everyone hated me and I felt sick. Also, it was nearly impossible to make new friends, because I figured that all of my friends' friends would never want to be friends with me because I was such a fucking freak.

Where am I going with this? Well, when I got to know some more people with autism and DD, and I began to think critically about this, I came to some conclusions:

1. A lot of people with autism aren't at all like the textbooks.
2. Autism is a lot more than social stuff, even for people who can talk. (This came out of a long period of thinking of myself as "more like a severely disabled person, except I can talk" because severely disabled people were allowed to have a lot of emotional troubles and problems with transition and stuff.)
3. Eventually: social skills don't exist.
4. I am a human.

I know I am disabled, and accepting that has really changed my life, but so has believing that I'm not socially impaired. In February I went into the first class of my last semester and made an awkward comment/joke to the girl sitting next to me. She looked at me blankly and I started to feel about as low as a Yeerk squashed under an Animorphed elephant's foot. It almost ruined my whole day--then I thought, we have different senses of humor! Maybe she doesn't have much of a sense of humor at all! She isn't a representative of humanity, and I haven't lost a war. We're just NOT THE SAME.

Or, God forbid, someone doesn't understand something I said. This used to be something that I would actually LIE about and argue about to anyone who I perceived as trying to tell me that I wasn't normal and couldn't do everything I thought I could. "Of course they understood me! You're just being overprotective! Maybe there's something wrong with YOU!"

Hey, guess what: my speech is hard to understand. AND sometimes I say things in a way that is jumbled and not connected. Oh no I'm going to drop out of school and delete myself from the universe. No, actually, I'm fine and I'm just going to say it again more accessibly. Life is good.

The problem is

I am very political about disability because politics has saved my life.

I have never been able to finish writing about going to a doctor this winter. I sought out learning testing because I was really confused by how slow I felt and how hard it was for me to do schoolwork, Activities of Daily Living, and other things. I seriously thought some kind of huge mass was missing in my brain because I just was not happening. I considered suicide because my friend gave me the relatively simple, but unexpected, task of taking his car to the gas station when I was driving it. I started crying and begging myself to drive into every truck I passed on the road, because I COULDN'T GO TO THE GAS STATION, it was too hard.

So, the doctor diagnosed me with some learning disabilities which aren't very severe and which I'd already been diagnosed with before. And he kept telling me I was really smart, something I'd also heard before. This increased an already very suicidal winter and early spring to fever pitch. I cried every time I met with him. I wanted a brain hole. Sometimes I still do. What is with the gas station? Why can't I just go there?

I don't know.

So, the worst thing about meeting with the doctor was that he didn't believe I had autism. In addition to getting my learning testing, I was also hoping to get a re-diagnosis of ASD because I hadn't had one in 8 years and I figured I might need more recent documentation at some point. Unfortunately, the doctor was very well versed in learning disabilities, and didn't know very much else about bad brains. Every time I talked to him, I would make the mistake of referring to myself as having autism, and there would be this little record-scritching sound.

"Autism! I thought we agreed to throw that out!" (in the same tone of voice he used when telling me I am smart)

Then he would explain to me that if anything he might be convinced I had Asperger's, not autism, because it is strongly associated with one of the learning disabilities I had (even though I had very good eye contact, he said). Every time he said this, I would explain that Asperger's, PDD-NOS, and Autistic Disorder are all on the autism spectrum, and when I referred to myself as having autism, I was just using the word that my disabled friends and I used about ourselves, which was in fact consistent with how the psychiatric community was coming to classify people, since the DSM 5 would have only the autism spectrum and not three separate diagnoses. He and I had this conversation probably six times, every time I met with him. The final time, I actually started yelling. "THERE ARE THREE DIAGNOSES THAT ARE CONSIDERED AUTISM SPECTRUM DISABILITIES. WHEN I SAY I HAVE AUTISM, I JUST MEAN THAT I HAVE BEEN DIAGNOSED WITH TWO OF THOSE DIAGNOSES IN THE PAST, AND I BELIEVE THOSE WERE CORRECT DIAGNOSES. I AM NOT THE ONLY PERSON TO REFER TO THESE THREE DIAGNOSES AS 'AUTISM.'"

"So that's the new thinking?" he said.

I began crying (again).

Now I know what you're thinking. Why didn't I just say Asperger's because that was a label he obviously would have been more likely to accept, understand, and associate with someone as "smart" as he thought I was? Why did I need to have this fight every time I talked to him?

I don't really know. I can't send letters if I think even one word is arrogant, shifty, dishonest, or undeserved (you can imagine this makes it difficult to apply for jobs, as I usually become really unhappy and take on some less urgent project to distract myself). I can't stop saying I have autism if that's what I think I have, and if having it has helped me define myself in a way that has radically changed for the better how I live my life.

I was not diagnosed by him IIRC, and I am not seeking rediagnosis now. Diagnosis of autism would require social impairment. Here's some stuff I could say:

I don't have a lot of friends.
I don't lose friends in fights more than anyone else, but I seem to grow apart from them really easily.
I have no romantic or sexual history to speak of.
I often don't fit in very well in the workplace.
I was bullied a lot when I was growing up.
I had few friends or no friends most of the time, from the time I was about twelve to when I started college.

These are actually true facts, but I don't consider myself socially impaired.

Here are two things that piss me off when other Autistic people argue with me and tell me that social skills DO exist:

1. when they tell me (admittedly, because I'm very confrontational and force them to say it) that they think I do have social impairment. I guess that this is really just a huge trigger/mental block thing where to me it means something much worse than what they mean, but to me, when someone says this, it's like they're saying that I have a false view of the world, and that makes me very upset.

2. when they tell me that I need to acknowledge that some other Autistic people are very different from me and have really different impairments from mine, and that even though my impairments aren't related to socialization, some people's are.

Number 2 makes me start thinking, what the fuck is autism then? Can autism actually be THAT different? But I will bite. Let's say that a few different disabilities look similar enough to have all been categorized as autism, and let's say that while all of my isolation and conflict with people blah blah DOESN'T come from social impairment, but just comes from other parts of my disability and/or me as an individual, other people with autism who have similar experiences with people actually DO have those experiences because of social impairment. The books don't describe me, but they do describe them. In fact, the DSM definition of autism describes them, and it doesn't describe me. So, the DSM and mainstream professional thought about autism at least starts to describe one group of people with autism, but doesn't describe me at all, and if I went to a psychologist and started telling them about what I consider to be my disability--i.e. cognitive and emotional problems and the relationship between those two things--it would take a miracle for them to diagnose me with autism. Because I have the kind of autism that's less real than the other kind.

So, to me, when someone starts saying, okay, well YOU need to understand that other people do have REAL SOCIAL PROBLEMS and REAL SOCIAL SKILLS DEFICITS, even if YOU DON'T, I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. No wonder I tend to prefer to call myself bad brains and insane in the membrane and Magikarp zombie waste of space. It seems obvious I belong in the Autistic community, and I even have that treasured thing: a fairly early diagnosis (from 1998, when I was nine), but I know that I would be said to have "grown out of it" or been misdiagnosed, by any reasonable medical professional--I know it can be taken away any time, and sometimes I feel that by being inseparable from the theory and values that prove to me I have a right to exist, I am making it easier for people to erase me.

I am saying this because I want to apologize to you, and probably other people I've forgotten doing this to before. It isn't you, and it's probably not logical. I panic and start hitting out.


  1. Your personal history of social interactions sounds remarkably like mine. Should you ever find yourself in NC and want a rediagnosis, TEACCH is awesome and super low cost (used to be free, I think it's $50 now?), and they had no issue with me adamantly refusing to say that I have bad social skills. I don't think I do. Like you, I have a history of awkwardness and anxiety in my friendships, of feeling one-sided and over invested, and I seriously question the rubric of social skills at all. They still were happy to give me a diagnosis, at 25, which is nice to have for returning to college.

  2. Wow Ali, thank you so much--I don't think I will ever be in NC but it makes me so happy just to know that that could even happen.

  3. I have no problem with people saying that they do have social skills deficits, or that autistic people tend to have social skills deficits, but I think your interpretation is astute...because most of the autistic people I know have really lovely "social skills." They're just not the same as most people's. Ways of everyday interaction that are natural to most people are not for us; the ways that we develop social interaction are strange to other people; that doesn't make them wrong.

    Anyway, does it seem to anyone else that the "social skills" that nypicals are said to have, and autistics said not to have, mainly consist of flakiness, cruelty, manipulation, and deceit?

    I've always *felt* like I lacked social skills. I always felt crippled. But I'm moving towards phrasing it as "I'm unlikely to pick up on unspoken expectations and social cues." There are contexts, like at parties with the people who I work with, in which I'm NOT socially impaired at all, and others in which I'm VERY socially impaired.

    We all have different experiences of autism because we're all individuals besides. The superficial explanations of textbooks just completely fail to account for the multi-dimensionality of the experience of autism.

  4. I have taught myself to have good 'social skills'. Yet i would still consider myself autistic. And even when younger, tho i did occasionally do some of those 'typically autistic' things like going on and on about my favourite subject, i never did once i realized that it wasn't welcomed. In other words, i DID pick up cues from others, unlike some on the spectrum.
    I think if YOU FEEL you're autistic, on whatever grounds, then you are. I believe there are people, scientists, now starting to talk about different kinds of autism, ie different gene clusters etc. So who knows, somewhere down the line, there may be 'type A, type B,' etc types of autism recognised. In the meantime, the fact that some of us don't fit the 'classic' profile just means that like the saying goes, if you've met one person with autism, you've met one person with autism.

  5. I feel like your whole "social skills don't exist" thesis erases me and my difficulties, possibly in a similar way to how you feel erased when you get told that autism has to have lack of social skills as a primary feature. I mean, I know you don't mean it that way and it's probably an irrational thing, but I feel as strongly about it as you do about this.

    I'm telling you this just to give you a different perspective. I've accepted that we don't agree on that issue and that's okay. And I'm certainly not saying my autism is more real than yours because that's simply not true. It's just that I think the ways autism has affected me, it has been the most painful in the way it's affected my relationships with people and my ability to either have them or have them be peaceful and mellow-like.

  6. Hi Fiona, I didn't mean to ignore this comment, I don't know why I didn't see it.