Category Archives: ponder

autism and race

This nifty graphic from NIMH shows some of the differences in rates of autism across a few different races.

I have been wanting to start talking about intersectionality for a while now. From the geekfeminism wiki: “Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another.”

Personally, I find this to be a worthwhile thing to think about. An intersection that I am seeing gain increasing attention in the autism community is the intersection of autism and gender. It’s widely known that there is a significant disparity between the rates of autism in males and females, and people are wondering why. Is there something different about the genders that makes autism more common in males? Is autism harder to see in females? Are we just not good at knowing what female autism looks like? Is there bias among clinicians who do the diagnosing? It is a topic that people are talking about, pushing for, and is gaining attention with various articles and books being written on the topic. Being more or less female, I rather assumed that when I talked about intersections, this would be the first thing I talked about.

But instead, I want to talk about autism and race. Or rather, I want to talk about how it’s not getting talked about, and that’s weird. Along with being overwhelmingly male, the autism community appears to be overwhelmingly white. While people are talking about the gender thing, I see very little about the race thing.

I often do homework as a part of putting together blog posts. I look for articles and books and statistics and other resources to help me better understand what I’m writing about, as well as provide support for what I’m saying. I have never before experienced the utter dearth of resources as I did for this post. There is very, very little out there talking about this.

There are all sorts of books on amazon – many of them scholarly, or at least non-fiction – about autism and girls. I found NOTHING on autism and race. Eventually I managed to track down a few books of fiction that deal with both autism and racism, but by and large they are about white male autistic people, who learn about racism by seeing it happen to someone else. There was one book with an autistic character which also dealt with racism and I was just not able to tell via the description or reviews if said character was white or a person of color.

So, for some reason, this is not getting much attention. Not enough to warrant even a single book. I also tracked down a few statistics. Even that was a bit tricky, with surprisingly few resources out there. However, the CDC, when doing their research, also did some looking into autism rates across races. The famed “1 in 88” study also found “When data from all sites were combined, the estimated prevalence among non-Hispanic white children (12.0 per 1,000) was significantly greater than that among non-Hispanic black children (10.2 per 1,000) and Hispanic children (7.9 per 1,000).” Yet while people talk about the 1 in 88 statistic, and the differences in statistics between genders, I found extremely little talking about the difference in race. All the questions that people are asking about autism and gender seem that they would apply to autism and race (and probably quite a few more besides), but people don’t seem to be asking those questions.

Why not?

Well, one of the catalysts for writing this post was learning that not only is there an absence of discussion, there is active resistance to said discussion. People, apparently, just don’t want to talk about it. ThAutcast posted a video talking about white privilege as a way to introduce both the topic of privilege in general, and the topic of racial privilege and how it relates to autism, given how overwhelmingly white the communities seem to be. There were some interesting responses to the facebook post.

I don’t understand this post. We are a community of people who our strongest message is that everyone is different and unique in their own way and not to judge one from another. How in the world would someone in said community even think about color? I just don’t get that??

Well that’s interesting. It’s true that diversity and the strength of diversity is an increasing theme in autism discussions. However, this person’s logic seems flawed to me. We don’t make a community diverse by simply saying that it is. We make it diverse by taking a good, hard look at it, seeing if we are succeeding, recognizing when we aren’t, and figuring out how to fix this. Ignoring privilege just makes it stronger.

Another person said, “race should not be a factor in anyones lives….autism sees no color…” Well… maybe it should and maybe it shouldn’t. Race should not be a problematic factor, anyway. Nonetheless, it is a factor. It does have an impact, and it does cause problems. Ignoring that impact does not make it go away.

So why are people resisting talking about this? Well, I don’t know, but I have a guess. I need to confess something. Until that post by TheAutcast, it had never occurred to me to think much about autism and race. I am white and I sat comfortably in my white privilege, seeing white faces reflected back at me, and it did not occur to me to question this. I think about gender because I need to – I do not have the privilege of ignoring it. But race privilege? I have that. It’s really uncomfortable to admit this. It is not fun to sit with that discomfort, to see where I’ve failed, to notice that I totally failed to connect my awareness of feminism and race to autism and race. It’s embarrassing. So I can sort of see how a person might prefer to declare that there simply is not a problem worth thinking about rather than sit with and accept that discomfort.

Nonetheless, I think we should. I think we need to. I have no idea how one’s race affects autism, but I should not go assuming that it does not, or that it is not worth talking about.

Now, there definitely are people of color on the autism spectrum. A particularly famous example is Stephen Wiltshire, the artist. So why is there a discrepancy? Well, one possible reason is bias on the part of those giving the diagnoses. One article I managed to find on the subject talked about an African American family trying to get their son diagnosed. He showed all the classic signs of autism, yet “doctors and other professionals would pin a wide array of labels on Ronnie – including developmental delay, attention deficit disorder, hyperactivity and a social and emotional disorder. Even obsessive-compulsive disorder and oppositional defiant disorder were mentioned.” It took years for him to get the correct diagnosis and the help he needed. On top of that, it looks like there is a distinct difference in the ages of white children and african american children in getting diagnosed (“white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids”). Why does this happen? How can we fix it? I don’t know, but we are never going to find out until we start to talk about it and make room for that conversation to happen.

Unfortunately, there does not appear to be a whole lot of room for that conversation to happen. As I mentioned, there are people who are pushing back on the idea of talking about this at all. I also took a look at a couple of autism forums and found some additional problems. The Autism Women’s Network (AWN) appears to be trying very hard to be inclusive. They have an absolutely lovely Statement on Gender on their About Us page, and their forums include sections dedicated to talking about gender, sexuality, and orientation as well as sections for parents, for school-related talk, for NT’s to talk to each other, for autistics and NT’s to talk to each other and more. Yet there was not a single forum for talking about autism and race. Nothing.

I found something similar on the wrongplanet forums. There is a section for adults, a section for teens, a section for LGBT, and more, but not a single section for talking about race or for people of color.

I do not believe that either of these two groups are trying to be discriminatory. In fact, given all their other sections, I would say that they are trying to be inclusive, but for some reason explicitly including race just did not occur to them. (I really hope it is not that it did occur to them, and they chose to not include that. For now, I am going to assume that they are not trying to exclude anyone) So I think that one thing I, at least, can do to try to change the landscape is write to both the AWN and wrongplanet, and ask/suggest they include a forum specifically for race/people of color. I have no idea if they will listen, but it seems like a good idea to try. I think I’m going to send something like the following:

To the creators of the AWN/wrongplanet forums;

I really appreciate that you have created forums and space for autism community. It’s nice to know that there is somewhere I can go to talk about various specific issues. I believe that you are interested in being inclusive and welcoming to diversity, which is demonstrated by the existence of forums specific to the needs of LGBT, adults, relationships, women, etc. By doing so you demonstrate that you are interested in what various minority groups have to say, and create an environment in which various people feel invited to participate and talk about issues that may be specific to one group or another.

However, I have noticed that no forum exists for people of color, or to explicitly talk about issues that have to do with autism and race. I am confident that this is not because you do not wish to welcome people of various races, but because it perhaps had simply not occurred to you yet to create a place to invite and welcome that kind of conversation. As such, I wish to suggest that you create such a place. We know that things like gender, age, and sexuality can all impact autism, and autism can impact our experience of those things. We cannot pretend that race is somehow exempt from that.

Thank you
(me)

If you want to email either or both of them as well, you are welcome to use my email as a template.

Now I want to end with a positive example of change. This is about a completely different context – academic conferences. Presenters at academic conferences also happen to almost always be white males. “Conference hosts, VC’s, and others often attribute this to a “pipeline problem,” the idea that there simply aren’t enough qualified white women or people of color who wanted to or were qualified to participate.” Eventually the creators of a conference decided that they did not believe this, and wanted to find a way to change it. So they took a good, hard look at what was going on, and came up with a strategy to change it.

Their solution was to eliminate networking as a way to get presenters, and go exclusively by meritocracy, using a combination of transparency, blind selection, outreach, and enlisting help. The result? They wound up with a significantly more diverse selection of speakers than most conferences have, because people felt they actually had a chance against the more well-known (white male) speakers, so people who normally did not bother to apply to conferences did to this one.

While the situation was different and, obviously, so was the solution, I want to include it anyway as a demonstration that we CAN do better. And that maybe we are unintentionally perpetuating a problem, and to fix it we need to recognize that and find ways to change.

And we can. It may be uncomfortable to admit we’ve made mistakes, but it is possible and it is worth the discomfort.

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Exformation

 

Anybody who knows me knows that I like words. Words are these amazing things. Strings of sound that we’ve managed to imbue with meaning. It’s incredible! Written words are also awesome. Those are little squiggly lines that we associate with sounds that we string together in (hopefully) similar ways to the spoken words to represent those meanings. And they aren’t the same, either. I write-think better than I talk-think, and despite accusations that it’s just because I can go back and edit, my brain really does flow differently and more smoothly when I’m writing.

In any case, words. Words are awesome. So recently, thanks to a friend posting a video on facebook, I discovered this guy called Ze Frank who makes youtube videos. I have gotten all into them, as they are most cool. One of them wound up being about this concept to which a word has been attached – exformation.

I got very excited about this, largely because I really like encountering new words and how they can make it easier to explore a concept that maybe you haven’t thought much about before. Or at least, they do that for me. Words are so awesome.

Exformation does not appear to have made it to the dictionary yet, as it’s a very new word. Just a baby word, really. So basically (if you haven’t watched the video, which is cool if you don’t want to), exformation is information that a person deliberately leaves out of communication. Everyone does this. Any time you’re explaining something and end with “but I’m sure you get what I’m saying” there’s probably more you could say that you aren’t saying, assuming that the listener will be able to unpack what you mean via everything else you said, or cultural assumptions, or shared experience, or any number of other things we can reference to pull meaning out of interactions. It’s assuming that the listener can and will be able to do that.

So then I, of course, though about this concept in terms of autism. People on the autism spectrum seem to often be accused of two particular things (ok, lots of things, but there are two I’m wanting to talk about).
1. That we talk and talk and talk entirely excessively, giving way too much information
2. That we jump topics in odd and unpredictable ways, or can be confusing when we talk because we assume the listener knows something that they don’t.
I think both of these can be connected to exformation. The easiest way would be to say an error in exformation, but I don’t like that kind of answer. I mean, I’m not always able to unpack what I’m supposed to know when I’m listening to someone else, but we wouldn’t say that they made an exformation error, would we? Actually, a lot of people would say that’s my fault too since I’m on the autism spectrum, but that’s a rant for another time.

The point is, knowing what not to say is just as much of a thing as knowing what to say. It’s based on knowing and understanding what other people know and understand, and having a pretty good idea about what they’ll be able to infer or figure out or calculate or whatever else. Which is actually kind of complicated, if you think about it.

Not too long ago I read a book called Death and the Penguin by Andrey Kurkov. It happens to be a Ukrainian book that was translated into English, and it’s for a Ukrainian audience. Now, as far as I know it was meant to be surreal and odd, but seriously, it was very very strange. I found myself wondering at what cultural assumptions I am supposed to have, or what shared experiences that, being American, I just don’t share that is supposed to inform the reading of that book. I don’t suppose I’ll ever figure that out short of going to the Ukraine or talking to someone who’s been there who’s also read the book who also understands how my cultural background informs how I look at the world.

So jumping back to autism, I’m wondering if sometimes these glitches (I think that’s a significantly better word than “errors’ for this) in exformation are because my experience of the world, as a person on the spectrum, is significantly different from most other people’s experiences of the world. My experiences and culture and whatnot all inform what I believe needs to be said or left unsaid, but sometimes that isn’t shared even with other people from the same general culture. So there’s a glitch. Or, in the inverse, maybe I don’t realize that I’m saying things that other people would be able to easily unpack, so from their perspective I’m going on and on about things that don’t need to be said. There’s a glitch. A mis-match.

I don’t think mis-matches are errors or mistakes or a sign that someone is wrong. When Andrey Kurkov wrote Death and the Penguin, he was not wrong to write it for an audience that shared his cultural background and general life experiences and assumptions. When I read it, I was not wrong to not be able to unpack whatever I was maybe supposed to. We’re just different and that’s ok, and it means that if I’m going to fully understand I’ll have to put in some extra effort. That’s ok.

So it’s ok to mis-match more close to home. I just think we need to be willing to understand when there’s a glitch and instead of deciding who’s at fault, working together to meet in the middle and figure out what assumptions we were supposed to have.

I like unpacking and inspecting assumptions anyway, so it all sounds most worthwhile to me.

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Blogging and Vulnerability

Here, enjoy a not-at-all relevant picture of some yarn I spun on my spindle. Woo hoo!

I’ve been doing my once a week blog postings for over a year now. I’m starting to notice that even though I’m in a tiny little barely-noticed corner of the internet, blogging once a week is having an impact on my life.

I do want to be noticed. I have a fantasy that someday my blog will have lots of readers because I’ll be saying things that resonate with people, or help them, or that they simply enjoy reading. So I think about this, and what I want to say, and how I can make my blog enjoyable and accessible and the kind of thing that people will share with their friends, who will share with their friends, and so on and so forth. Which means a lot of looking at the bloggers who have managed that and what I can learn from them.

Some of it is simple things, like making sure my posts have a picture so there is something to look at besides words. I know I like it when blog posts have pictures, and I doubt I’m unique in that, so I spend lots of time looking through various creative commons licensed pictures trying to find ones that fit my posts. I don’t always succeed, but it’s nice when I do.

I’ve also noticed that successful bloggers – or at least, the bloggers that I most enjoy reading (or watching if they do video blogging), really put themselves into what they are saying. They get up in front of the whole internet and proceed to be honest, sometimes downright vulnerable. How scary that must be! But in doing so they come across as genuine and real, so when they say something I find myself wanting to listen.

So I wonder if or how I should emulate that.

And then I watch a video about closeness and vulnerability and feeling worthy. In the video, Dr. Brené Brown, a research professor at the University of Houston, Graduate College of Social Work, talks about how she decided to sit down and figure out the hows and whys of people feeling loved and like they belonged. Her conclusion? That those who feel that way believe they deserve to feel that way, and they treat vulnerability as simply how that happens, rather than as something terrifying to be avoided. And I watch that video and I don’t want it to apply to me. I tell myself that it’s for neurotypicals and I’m on the autism spectrum and things are different for me.

Yeah, that’s a bunch of bull.

Not that things aren’t different for me, because they are. But the fundamental laws about how closeness functions and how we get there still apply to me, because they apply to everybody. And then I wind up thinking about how much I avoid vulnerability, or I dole it out in carefully controlled amounts because I don’t want to deal with the uncertainty of how people will respond. I fear that the response will hurt, and I fear that I deserve that hurt because of how different and weird and often clueless I am. I tell myself (or worry or fear) that people don’t actually want to see that vulnerable side of me so it’s best for everyone if I keep it hidden away, and in so doing I make it that much harder to form those close, intimate connections that I crave so much.

So I write, because ultimately I am trying to be a blogger and writing is how that gets done. I have to write and keep writing. It means writing when I’m inspired to write and writing when I’m NOT inspired to write but if I’m going to have something ready in time I’d better get typing. Plus I think better when I write and I like to write and my brain sorts itself out in writing in different and better ways than in other types of thinking, so blogging gives me more push to do a thing that I really should be doing anyway. It gives me structure and a goal and a public voice, and it makes me think about things that maybe I wouldn’t otherwise think about, and makes it harder to dismiss things that maybe I would have otherwise dismissed because they are uncomfortable.

And because it’s a blog, once in a while I post what I write so that anyone who stumbles across my little corner of the internet can see some little glimpse of me, and I can hope that they got something out of it.

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How empathy works for me

Picture by geofones on flickr

Empathy seems to be a fairly popular topic amongst autism bloggers, for reasons which include certain autism “experts” and their opinions on the matter, and certain unfriendly ways that autism is depicted in the media. I’ve written once before about problems in how we use the word and all the things it can mean, but I have yet to opine on autism and empathy directly. I am still solidly in the stage of thinking through how it all works for me and am not prepared to make broader statements about empathy and autism, but I can certainly blog about myself easily enough.

So I pose the question to myself: just how does empathy work for me? Rather predictably, the answer is not short and simple simply because empathy seems to mean so very many different things.

The simplest version is the ability to read facial expressions. I’ll be honest, I’m not so great at that. I can determine basic expressions, like smiles and frowns and furrowed brows, but I often seem to miss subtleties. The way I once put it is that when seeing cues and such from other people, I will often see 2+2=4. Unfortunately, it may have actually been 2.3+2.7=5 and I simply could not see that .3 and .7, so my conclusion was off. So this is definitely an area where it could be said that I struggle with empathy.

If empathy is about caring about the feelings of others, than I have no real problems. I care about people a lot. A whole lot. I am not always particularly good at expressing it (actually, I am often quite poor at it, sadly) and I rarely know what to do in response, but I do care. If empathy means caring, then I am quite empathic. On the other hand, if empathy means knowing what to do, then I am not particularly empathic at all.

If empathy means feeling what other people feel then… actually, this one is tricky. I’m not sure. I do not seem to automatically feel what people around me are feeling; at least not all the time. I can and do, however, imagine myself in the place of someone else, and imagine what I would feel were I in their position. This is not an infallible method, though, as what I feel is not always going to be what other people will feel. Of course, it’s not infallible for other people either, and I have had multiple unfortunate encounters with neurotypical people who seem to use this method, but got tripped up when I turned out to be different from them. It does not appear to be only autistic people who struggle with empathy in that way, it’s just that neurotypical people have the privilege of knowing that most people will respond to input similarly to themselves, while autistic people tend to be very much different. That said, I am able to see the world from the perspective of other people; I just have to work at it a bit. So I guess my answer to this one is “sort of” but I am more aware of it’s shortcomings than many neurotypical people.

There is another area that is rather more woo-like, so I’m a little bit hesitant to write about it. That being – that I feel the presence of other people as pressure. Attention of a person is even more pressure, like standing in a stream of water. When I’m in public, I feel all the people around me as though they are pushing on me. This was actually a significant problem when I was younger, and I spent years trying to figure out how to build walls around me to keep that pressure at bay, with mixed success. That feeling of pressure from people around may or may not actually convey useful information to me, and the amount and type of pressure can vary wildly from person to person and situation to situation. If I’m not careful, it can be overwhelming (and sometimes is even if I am careful). I have no idea if this would qualify as a form of empathy or not, or even if many people would be inclined to believe me. Nonetheless, there it is, and it is definitely one of the reasons I pull away from groups and crowds, and sometimes even individuals. It can get intense.

So if a person were to ask me if I experience empathy, the simplest answer would be yes, but after that I would need to ask them precisely what they mean by empathy. It is not actually a simple word.

To anyone who feels like answering a question: how would you say that empathy works for you?

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Social Face

A few weeks ago when I posted about having gotten frustrated, I mentioned that interacting with people generally requires two days of recovery, very roughly speaking. A commenter asked if this was true of my Significant Other, Nee. The answer to this is, happily, no. He does not drain me nearly so much as most people. That got me to wondering precisely why this is – what’s different about him?

I suspect there are several contributing factor to this, and generally to why different people drain me to different degrees. One of them is the touching thing, which also posted about a few weeks ago. If I don’t want to touch a person, than dealing with something like a handshake is challenging and unpleasant, whereas people I like and am comfortable with, like Nee, I actively enjoy touching.

Another factor is the Social Face, and that’s what I want to talk about today. When I am going out and interacting on a social level, I wear what I call my Social Face. It isn’t just about being in public, as I do very little with my Social Face in situations like the grocery store. It’s largely about interacting with people on a personal level. Now, I don’t know for sure, but I suspect that everyone has some form of Social Face, and I suspect that everyone’s Social Face is different. I want to say I suspect that everyone’s social face is draining, but then I remember about extroverts and people who are energized by socializing. That doesn’t quite mesh with my idea that a Social Face is draining for everyone, so I’ll simply assume that the highly extroverted work ENTIRELY differently from me and just leave it at that.

Before I go any further, I’m going to give a brief rundown on what my Social Face is/what I’m doing when I’m wearing it:
*cutting down on the stimming
*instituting correct/appropriate facial expressions
*remembering to reciprocate social questions
*working to look directly at people/make eye contact
*making sure I keep a friendly tone of voice
*dedicating a rather large portion of my internal resources on social awareness and rapid processing

Some of these items I am slowly dropping, or at least putting less and less energy into. I constructed my social face over the course of years of trying to Be Like Everyone Else, well before I ever knew why it was so challenging for me. Which basically means much of my Social Face is deeply ingrained at this point, and taking it off in social situations is actually quite challenging. I tried to do it for a few minutes a few weeks ago, after feeling particularly stressed and overwhelmed and wanting a brief break before going back to Being Sociable. I was only able to do it by requesting that the person I was with ignore me entirely for a few minutes, and even then most of it stuck around. Like tar.

The hard part is that dropping bits, even bits that I think shouldn’t be important, carry consequences. As I allow myself to stim in public more and more, I face the fact that people are going to judge me and draw perhaps unjust conclusions from it when they see it. Even people who mean well can be derisive and condescending (possibly without meaning to) about stimming, and it can be hard to deal with sometimes. And sometimes, if I’m just too tired or too stressed to keep it on, my Social Face slips. Once while socializing I didn’t look at a friend of mine the entire time we were together. I actually had no idea I was doing that, but she felt hurt by it anyway. So I have to make sure it stays on, even during the times when it’s falling off on its own due to my own limitations.

A big thing is that my Social Face is draining. VERY draining. Downright exhausting. As I am realizing this I am starting to resent the Social Face and my partly self- and partly externally-imposed need to keep it on.

So I’ve slowly started to dissect my Social Face, in order to figure out what all it’s made of (I imagine there’s more to it than what I’ve listed so far), figure out why I do those things, and figure out what is important and what I put there simply out of a desire to Be Like Everyone Else. I’m pretty sure the no stimming thing was out of a desire to be normal. Reciprocating social questions, on the other hand, is something I actually care about and want to do more of, as well as remembering to spontaneously ask social questions. Other things are iffier, like eye contact and the dedication of resources to processing. I’d like to tone those down, but I worry that the social consequences of doing so will be greater than the personal consequences of wearing the Social Face. I’m honestly not sure what the right answer is.

Cycling back to the beginning – a huge reason why Nee drains me so much more slowly is that I do not wear my Social Face around him. I can stim and he doesn’t care. My facial expressions can be all over the place and it doesn’t phase him. Our social questions are minimal, I can go for days or weeks without looking directly at him, and he does not seem to mind when it takes me an oddly long time to process it when he randomly says something at me. So at home my Social Face stays in its box (or wherever it goes when I’m not wearing it. may as well be a box, right?) and I stay much more fresh and comfortable.

Maybe someday I’ll minimize my Social Face and it won’t be so stressful or exhausting to wear, and maybe someday it will be ok to be different in public.

I’m curious – to anyone who feels like answering, do you have a Social Face? If so, what does it look like?

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Functioning

This is a particular label point that I am still working out. I know there are many people out there who dislike the high/low functioning labels, but I’m not sure if I agree with them or not. I do, however, seem to be gradually leaning in that direction.

At first my opinion of the labels was much like my opinion of most labels – very useful but sometimes used badly or the wrong way, but that’s hardly the label’s fault. Buuuut then I started thinking about it more.

First of all, I wondered where else “high functioning” is applied. The primary other area I saw it being applied was alcoholism, where “high functioning alcoholic” is apparently a way of distinguishing alcoholics who are holding down a job from, basically, winos. Even in that context I saw people occasionally mentioning problems with the label, and how it might make it sound like a high functioning alcoholic doesn’t have problems or isn’t destructive when, in fact, alcoholism hurts everyone, regardless of how well-functioning any given alcoholic happens to be. As labels go, it’s not so great.

So then I got to thinking about what use the labels might actually have. I mean, that does seem to be the central point. Can I find an actual, reliable use for high/low functioning? Even more so, can I find a use that outweighs any potential problems with how the label is used?

I never got past the first question. Part of the problem is that people on the autism spectrum tend to have a rather significant amount of variance in what are usually considered “normal” skills. As such, it is not uncommon for a person to be considered “high functioning” in one place and “low functioning” in another. It simply depends on what the viewer is looking for, which causes the labels to be of questionable meaning. As Emily Willingham puts it, “A good science geek knows that function is often a matter of environment, not a constant measure.”

So what do people mean when they say that someone is high functioning? As it turns out, there is a tumblr asking that very question! How useful. Here are a few of the answers people have given:

I met someone for coffee and he said “You’re the highest-functioning out of all the high-functioning autistics I’ve met.”
All he had seen me do at that point was buy coffee.
http://whatishighfunctioning.tumblr.com/post/13803531667/can-buy-coffee

If you are considered a physically attractive and verbal adult woman, then you automatically having passing privilege (and will be seen as a liar when you say you cannot do things), and you automatically will be considered high-functioning.
http://whatishighfunctioning.tumblr.com/post/12337002312/appeal

I once had my own experience with someone saying to me, “you must be very high functioning.” I was telling them about my recent diagnosis, and they were rather surprised by it. As far as I could tell, what they meant was “oh, I wouldn’t have guessed.” I know they meant it as a compliment, but I found myself very uncomfortable with the comment anyway. The assumption seemed to be that being on the autism spectrum is automatically a bad thing, so it’s nice to temper it with “high functioning.” Though that’s just a guess on my part.

As far as I can tell, both from my own (admittedly limited) experiences and from what I’ve seen other people say on the subject, “high functioning” is mostly about passing. It’s about looking normal. I can pass for normal. All I have to do is only interact with strangers in limited and/or carefully controlled circumstances, never go to parties, and not go out in public if I’m too tired or stressed to make eye contact. In fact, to the average random stranger, I do pass for normal – maybe as a little odd, but most of them wouldn’t guess that I’m an aspie. Of course, I’m aided by the fact that most people, through no fault of their own, have a limited and stereotyped idea of what autistic people “look like.” So because people are not immediately aware of the fact that I am on the autism spectrum, because it does not jump out in anyone’s face right away, that means I am high-functioning. Unfortunately, people also wind up with a number of ideas of what “high-functioning” is supposed to mean. So when they look at me and see “high-functioning” they then assume that I can do all of the other things that they associate with the term – things I cannot necessarily actually do.

Once people get to know me, though, my differences tend to stand out more and more. I can’t always maintain my social face. Sometimes I stim A LOT. Sometimes I get confused by things most people consider obvious. Sometimes I can’t stand to be touched. People who know what Aspergers is like can, and have, guessed that I am on the spectrum. Several times people have been surprised when I failed to live up to what they think “high functioning” is supposed to mean. As such, I am not entirely convinced about this passing thing.

In any case, I went along mostly waffling about my opinion until I stumbled across an article comparing “mild” autistics to “severe” autistics. It really only qualified, at best, as a preliminary study, but the results were interesting. That being, that those who might be considered “high functioning” actually struggled just as much as those who might be considered “low functioning” as adults, in terms of work and relationships. Which, of course, highlights one of the several problems with labelling someone as high functioning – the assumption that since they are so high functioning and all that, they don’t need much in the way of help or resources. That is a dangerous way to think, that clearly needs to be called into question.

There is also the inverse problem. When people see someone and view them as “low functioning” they often assume that the person must not be intelligent or have skills or have anything to contribute or say. Amy Sequenzia definitely has something to say about that harmful assumption.

So overall the label does, unquestioningly, have severe problems. Problems that seem to go beyond simple mis-use, and well into the realm of inherent, unavoidable issues.

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more on labels and identity

So apparently some people out there think that everyone on the autism spectrum should call themselves “autistic” and that words like “aspergers” are harmful and should go away.  I’m still undecided on the whole “autistic” thing, but I do know that I don’t think the arguments for it are good ones.

There are some Aspie supremacists out there.  I’ve run into one of them on the internet.  Once.  And by the time I ran into that person, he was already re-thinking his stance.  Of course, it’s still possible that there are hoards of them out there and I just haven’t run into them yet.  In any case, one of the arguments against the word “aspergers” is that anyone who uses it is, deliberately or not, aligning themselves with these people and reinforcing their point of view.  I don’t buy it.  There are a small number of extremist feminists out there too – the ones who really are the “man-hating female supremacist” stereotype that gets bandied about.  I do not, however, think that everyone who uses the word “feminist” is trying to align themselves with the extremists, nor do I think the the extremists gain power by all the reasonable people who use the word.  In the same way, I don’t think it applies to aspergers either.

I’m just going to quote another point: “They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

I’ll be honest.  I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it.  I am simply too confused to be able to do so.  I do, however, know that I tend to feel alienated when someone tries to tell me how I should identify.

One of the big arguments refers to the DSM-IV (which means the argument may be moot by now, but anyway): “The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have “no clinically significant general delay in language.”1 There is no other difference in diagnostic criteria”

This is something I’ve heard a lot of.  A WHOLE bleeding lot of.  I finally decided to look it up for myself, and I discovered that there are, in fact, differences beyond the language thing.  The first section, “social interaction” of Autistic Disorder is exactly the same as the first section of Asperger’s Disorder.  Identical.  However, immediately after that autism has a whole section regarding “qualitative impairments in communication” that asperger’s lacks.  It has the oft-cited optional delay or lack of spoken language, but also includes impairments in the ability to initiate or sustain a conversation, stereotyped and repetitive use of language, and a lack of spontaneous make-believe play.  None of those things are in the Asperger’s criteria.

Then there is another section, “restricted repetitive and sterotyped patterns of behavior,” that is once again the same in both criteria.

However, beyond that there are two more differences between the criteria.  Autism requires that there is some sort of delay in functioning with an onset prior to three years of age.  That alone means I likely could not be diagnosed with autism under the DSM-IV.  As far as I know, my social challenges really started to show up in kindergarten, which is definitely too old for autism.

Additionally, along with language delay being contra-indicated in Asperger’s, there must also be no clinically significant delay in the development of self-help skills, adaptive behavior, and curiosity about the environment.  So a person that had significant delays in learning to use the toilet or dress themselves would not be able to get a diagnosis of Asperger’s.

I will grant that the differences are few.  I will grant that the line can be blurry.  Nonetheless, it is simply not true to state that language delay is the only difference between the two diagnoses.

Getting back to calling it all autism, one thing I have wondered about is how those who are diagnosed with autism feel on the matter.  It has been surprisingly challenging for me to find much of anything on the topic, but I did eventually find this:

“I have a classic autism. I was nonverbal when I was young, but learned to verbalize. I do not have Asperger’s Syndrome.”

So I can say that there is at least one autistic person out there who is likely not in favor of everyone on the autism spectrum calling themselves “autistic.”

Finally, I really can’t be in favor of telling other people what to call themselves or how to identify, especially given how murky this area is.  Much as it’s uncool when a neurotypical barrels in and tells a bunch of aspies and autistics that we should really call ourselves “persons with aspergers/autism” (I plan to write more on that in the future), it’s also uncool to tell me that I don’t get to call myself an Aspie, even though I’m diagnosed with Asperger’s and that’s the word that fits me best.

That said, I am increasingly wondering how the new criteria for the DSM-V is going to impact this particular social debate.  I also really wish I could find out more about how people with “classic autism” feel or think on the matter.  As it is, I think I’m going to continue to call myself an Aspie for the time being.

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1 in 88

Apparently the CDC recently released a study claiming that now 1 in 88 children have autism.  I’ve been seeing a large number of articles and blogs about that, with lots of speculation as to why it could be happening.  The answers seem to largely be split between “better testing” and the usual conspiracy theorists talking about vaccines or “toxins” or other such things.  I did, however, find two articles to be particularly interesting.

This article was one that I found talking about the issue.  There was one particular sentence towards the end that really jumped out at me.  “[The CDC] checked health and school records to see which children met the criteria for autism, even if they hadn’t been formally diagnosed.”

Maybe it’s just me, but that seems very, very odd.  Health and school records do not a diagnosis make.  Instead, what it seems to be is that 1 in 88 children might have an autism spectrum disorder, but it does not seem at all reasonable to treat that statistic like an actual fact, given how it was achieved.

This brings me to a blog post I found talking about the issue.  In it, a parent of a child with a developmental delay (DD) cautiously speculates that maybe an increasing number of children with DD might be getting lumped in with autism, even if they don’t actually fit.  Why might this be happening?  Well, there is a lot of overlap.  They can look superficially similar, and it can require more careful testing to determine what is actually going on.  Even worse, parents have incentive to diagnose their developmentally delayed child with autism, regardless of whether or not it’s accurate because apparently right now autistic children get better support and more services than children with other developmental delays.

I was actually rather shocked when I read that last article.  Not just because of what it said, but because I realized that in my ponderings on Asperger’s and autism, thoughts of other DDs had never even crossed my mind.  I like the idea of neurodiversity and autism pride and celebrating differences and all that stuff, but how can I champion neurodiversity while privileging ASDs above other forms of DDs or neurological differences?  The answer is – I can’t.  Yes, my personal focus is Asperger’s because that’s what I have, but I can at least keep in mind that there is more to neurodiversity than autism and NTs (neurotypicals).  April is autism awareness month, which I’m sure is a good thing for many people, but I think for me it’s also a good time to remember that there are other things that also deserve awareness, and they seem to be getting lost in the noise.

All of which leads me to speculate if maybe the people doing that CDC study were unconsciously privileging autism as well – lumping children with overlapping symptoms into autism, even if they fit something else better.  I guess that’s another way of saying that I’m not so sure I trust this 1 in 88 statistic.

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DSM 5

This has been on my list of things to write about since I started my blog, but I’m kind of intimidated to write about it.  Plus, it’s a topic that I honestly don’t really know what to think of, and I haven’t properly managed to form an opinion yet.  Also, I apologize ahead of time for the fact that this post is not going to be fully cited – I’ve been reading articles for months, but have failed to save the links and now I can’t seem to find them again.  hrmph.

So, as you may or may not know, a new version of the DSM is due to be coming out in a few months.  The entire process has been surrounded by controversy right from the start, with a large number of people unhappy with how it’s been handled, both generally and regarding specific things.  One of those specific things is the fact that a number of disorders are now going to be consolidated under the “autism spectrum disorder” umbrella, which will have one set of criteria.

Reactions have been varied, but largely negative.  Some people fear that many people will be excluded and will thus not have access to services they need (and others disagree).  Some people fear that having it all lumped together will cause those on the more severe end of the spectrum to be even more invisible than they already are.

I have a hard time figuring out where I stand on it.  Once I was diagnosed, I finally allowed myself to really start researching into Asperger’s syndrome (AS).  I learned very quickly that information about AS was often blended together with information about autism.  Shortly thereafter, I learned that the reason for this was because the line between AS and autism was blurred and confusing, and no one seemed to be entirely clear on where it was.  I have heard a number of different ideas (some say the difference is in language delay vs not, other people in whether or not there is a desire for social contact, etc) but always with the idea that at best, it’s a rough, general distinction.  I cannot directly speak for diagnoses like PDD-NOS or childhood disintegrative disorder, but I would not be surprised if the same thing holds true for them as well.  So it seems clear to me that the distinctions are flawed and as such, probably not very useful.  Plus, people have already been referring to all these diagnoses together as autism spectrum disorders (ASD), so making it official could be useful.

On the other hand, we are talking about a very broad spectrum, which contains people who are very low functioning and people who are very high functioning.  I have a hard time with the idea that one set of criteria will cover everyone.  Plus, people with different levels of functioning will obviously need different services.  I wonder how having only one diagnosis will change how services will work.  I can see the argument that lower-functioning people will have a harder time getting much-needed services, simply because the diagnosis of ASD will not indicate how severe they are.  Will there be a concept of trying to indicate where people are on the spectrum?  Will diagnoses include functional severity ratings?

Ultimately, I don’t think I can form an opinion until I see what happens.  I have always been rather bad at prognostication, so I’d rather gather more data than forecast doom and gloom based on speculation. Though I will admit, on reading over the proposed new criteria, it is rather a relief to me that I would still qualify.

And hey, look at that.  I managed to find most of my links!

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on passing

Recently I wrote my blog post “How out to be.”  In it, I briefly mentioned that I can pass most, but not all, of the time, and much of it’s premise was on the fact that sometimes passing just isn’t possible.  (also, please note – in my blog when I talk about “passing” I am specifically referring to hiding disability)  While I never explicitly stated it, I imagine it would be entirely reasonable for a reader to assume that if I could pass 100% of the time, the question on being out would have a lot less pressure.  Not only that, but if I could pass 100% of the time, I would.

It’s not even something I had really thought about.  It was implicit in that post because it was implicit in my thinking.  Of course I should pass if I can, of course I should try to hide my differences, of course I should make my disability non-obvious.  Then, in an entirely different context, a friend of mine shared this here link.  Now, this blog is really not about my situation at all.  It speaks of disability in terms of masculinity and feminism, and possibly importantly, it spoke of physical disability.  My disability is only physical in that it is neurological.  There is nothing wrong with my body, and it only shows to others in my behavior.  Still, as I was reading I got to this part:

“It also feels like I have spent years betraying other people with disabilities, by hiding mine, and trying to avoid as much ableism as I could, which, much like any sort of passing and any sort of systematic oppression, is always a losing game.”

The author was speaking of passing as able-bodied (not-disabled) and eventually no longer being able to.  And that really struck me.  I thought (well, not in words since I rarely think in words, but this is how it would roughly translate into words), ‘waitaminute, you mean to say that not passing is an option?  And that it might be the right option?  What?’

It actually took a few days for my brain to work through that one.  Who would have thought that deliberately not passing was an option?  Now, I have seen plenty of discussions on the perils of passing.  I have seen people talk about how challenging it can be to pass, how it can feel like never being allowed to be oneself, how they are worried that their ability to pass may be going away, how annoying it is that when you pass people think that means you don’t have problems anymore, and on and on and on.  Never once have I seen someone say that maybe it’s better not to pass.  Because of course you pass if you can.  It’s better that way.

Importantly, there actually are good arguments in favor of passing.  AS does not always get a lot of respect.  I have seen some say that the increases of “mild” autism is making the public think that autism isn’t a big deal, and that such people are taking away much needed resources from those on the more severe end of the spectrum.  I tend to feel ashamed and guilty when I see such statements and I have yet to figure out how to resolve the inner conflict that comes up when that happens.

Additionally, there are people out there who use AS as an excuse to be assholes.  I have no idea how many of them are actually on the autism spectrum as opposed to people who think AS simply means “socially awkward” and decided that it would be a good excuse.  In any case, that has also shaped public opinion.  I don’t want people to think that about me.

Yet another thing – as I mentioned, AS isn’t physical.  Even people with physical disabilities face challenges that they should be able to do what everyone else does if only they want it badly enough, or if they’re just willing to try hard enough.  With a disability like mine, that attitude becomes so much stronger.

Plus, the fact of the matter is, society only tends to tolerate differences so far.  There are accepted ways to be non-conformist, and if you don’t conform to those ways society tends to punish you.  Having AS means that I am different in ways that many people really do not accept.

All that seems to add up to my prior implicit assumption – that if I can possibly pass, I should.  But then I think about the blog post again.  And I wonder if maybe letting myself be who I am might be the right choice in another way.  I could try to reduce the stigma around mental illness.  I could be an example that disability does not have to be physical.

Or in a less grand, societal way, I could think in terms of bettering myself without mashing that up with also hiding myself.  When people use language metaphors I could let it show that I need a little time to decipher them instead of trying to race my way through the logic to figure out what they mean while not letting on that I need to do so.  I love the idea of not being ashamed of being different.  That would take a lot of courage, though.  To be painfully honest, I’m not sure I have that kind of courage.  Especially not in the face of the challenges to not passing I mentioned above.

I feel it is important to mention – this is not simply a matter of being out.  I can be out and still work on passing for normal, or conversely I can refrain from trying to pass for normal but not be out.  In any case, people intellectually knowing that I have AS is a very different thing to people actually witnessing the ways that I struggle, or even spimply witnessing my oddities.  Heck, even stimming in public is a thing aspies try to hide.  Even nice people will look at me funny and avoid me if I’m rocking in a public place.

I don’t really have an answer to this one.  It is a very new ponder for me and I have barely begun to wiggle my way around it.  Still, I find it interesting to think about, and the idea of simply being my literal, strange, stimming self without trying to hide it all the time is very appealing.  Scary, but appealing.

Thoughts would very much be welcome.

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