Lest Anyone Question My Diagnosis

I just retrieved from my parents a bunch of paper journals I kept as a teenager. Most of it is regular teenage angst, documented in obsessive detail, but there are also some kind of amusing gems like my account of a high school field trip to an amusement park.

I wrote for about two pages about a conversation I had on the bus on the way to the park (my friends and I made a list of the most annoying songs we knew, and the most romantic songs we knew), the decorations in the pseudo-Ancient-Egyptian food court where we ate lunch, and the arrangement of food on our lunch trays.

Here’s the full text of my food-arrangement rant:

For lunch my group and I ate at the ____ Cafe because it was inside [editor's note: it was raining that day]. J__ and N__ both had cheesecake. They also both had red trays. A__ and I both had chocolate cake with little chocolate chips on the sides and little whipped-cream puffballs with the same consistency as Sculpey. Pretty stiff. We also both had orange trays. We also all had macaroni + cheese and garlic bread and a coke. When we were in line it was all nicely symmetrical. Red-Orange-Red-Orange. Cheese-Chocolate-Cheese-Chocolate. Then everything else was the same. Except A__ had a large coke and everybody else had a small coke. And other than the symmetry everything else was bad.

There’s an illustration, which I’ll spare you. It’s pretty clear that the symmetrical trays and weird decor in the lunch place were the highlight of the day. The only indication in the entry that I went on rides or anything was an off-hand remark that my friends and I had our picture taken while we were riding a roller-coaster.

Again, this isn’t totally representative of my journal, but it probably says something that this is one of the happiest entries I wrote.

The Law of Excuses

I’ve been thinking a lot recently about a particular legal double-bind faced by people with disabilities that affect behavior and, to a certain extent, people in commonly misunderstood situations that affect people’s emotional state (e.g., poverty, abuse, and certain crises of identity). When members of these groups find themselves facing criminal, financial, or disciplinary sanctions for behavior that they feel was related to their disability or situation-induced emotional state, it may be in their interest to seek leniency in light of their disability or situation. On the other hand, because such arguments for leniency are often interpreted by the broader society as confirming stereotypes that members of these groups are unpredictable, incapable of making sound decisions, and even dangerous. These stereotypes, in turn, can perpetuate the group’s exclusion from employment, segregation from the community, and even deprivation of access to their own children.

I actually started thinking about this in the context of the trial of Pfc. Manning, who leaked classified State Department memos to Wikileaks. Defense attorneys cited Manning’s growing discomfort with being perceived as male – discomfort that had been expressed to numerous people, including at least one superior officer – as evidence that Manning was unstable and thus should not have continued to have access to classified materials. (Washington Blade). Understandably, a representative for the National Center for Transgender Equality objected to the suggestion that people in the process of coming out as transgender are inherently unstable and shouldn’t have access to classified materials, arguing that Manning’s gender identity was “totally unrelated” to the leak to Wikileaks.

Here’s another (less recent) example involving autism, since I seem to talk about nothing but autism lately: Reginald Latson, a 17-year-old boy with diagnoses of Asperger’s, ADHD, and Intermittent Explosive Disorder was convicted of assault on a police officer when he fought back (and caused pretty serious injuries) against a police officer who tried to arrest him. His attorneys pled insanity, arguing that the boy’s disabilities, combined with the stress of being forcibly grabbed by the officers (for, as far as I can tell, just being an African-American guy sitting around doing nothing), caused an “irresistible impulse” to fight back (FYI, this kid’s state, Virginia, is one of the few states that allow an insanity plea to be based on the existence of an irresistible impulse. Other states usually require much more severe cognitive impairment such that the defendant doesn’t understand the wrongfulness of their actions).

ThAutcast took issue with both the Washington Post’s reporting on the trial (which implied that violent, explosive behavior was very common among Autistic individuals and which didn’t include an interview with anyone who was actually Autistic), with the suggestion that it was autism that made the defendant attack a police officer, rather than, say, Intermittent Explosive Disorder.

Now, most likely, the reason why they didn’t focus on Intermittent Explosive Disorder either in the defense or in the Washington Post article is because, most likely, you can’t actually base an insanity defense on Intermittent Explosive Disorder. IED, like Oppositional-Defiant Disorder and Antisocial Personality Disorder, is one of those DSM-IV diagnoses that are defined exclusively in terms of the person’s propensity to antisocial behavior (yes, I’m citing Wikipedia, but you can also check the DSM-IV if you have access to it), without any particular regard to the person’s capacity to inhibit it or the underlying root of the behavior (other than that it can’t be due to other disorders like ADHD or Alzheimer’s). To courts, an insanity defense based on IED sounds a lot like saying “I’m not responsible for going off on that cop because I go off on people all the time.”

ADHD and Autism, on the other hand, are particularly fruitful sources of an “irresistible impulse” defense, because both are known to affect individuals’ capacity for emotional regulation in at least some situations, and emotional regulation is (in most people) a key component of self-control. It’s something that I and many disability advocates don’t like to acknowledge because we don’t want to contribute to people’s unreasonable fears, but it’s something that can’t be totally ignored. To do so would be a disservice to people with disabilities who are more likely to come into contact with the criminal justice system – for example, African-American teenaged boys like Latson – and who may not be able to meet the expectations police officers have for how a “non-criminal” would act when confronted by the police (i.e. – verbally and physically compliant even when subjected to rough physical force by the police officer). As ThAutcast has suggested, it’s perfectly plausible that the defendant in this case lashed out, not because his Asperger’s made him particularly aggressive, but because his Asperger’s made him totally panic when he was unexpectedly confronted and pushed around by a police officer.

Going back to Manning, I wonder if anyone would bat an eye if, instead of being transgender, Manning had been in the process of losing a job or becoming estranged from family and had cited these as sources of emotional instability. Both of these are pretty distressing in and of themselves, and, judging from conversations that Manning had with the person who eventually tipped off the police, Manning potentially faced both of these as consequences of coming out as transgender. Some people might say that potential job loss and family issues are not good excuses for Manning’s behavior, but few would fear that such a defense was maligning all people who faced job loss or estrangement from family.

Perhaps such attempts to “normalize” requests for leniency, by phrasing them as similar to more commonly understood phenomena such as feeling threatened or feeling overwhelmed by a difficult life situation, are the best way to reconcile the need for leniency and the need for acceptance.

For example, instead of forcing people with mental disabilities to use the “insanity defense” when they act out of a perceived need for self-defense, we actually gave them access to a modified “self-defense” plea that required only that they sincerely feel that they are in danger, and that this feeling be reasonable for a person with that disability? Similarly, what if, instead of focusing on Manning’s gender identity itself, defense attorneys had focused on the consequences that Manning anticipated as a result of coming out as transgender, many of which would, in and of themselves, cause most people serious distress? Would these arguments still risk encouraging stereotypes that members of these groups are inherently unpredictable or unstable?

These are all just initial thoughts; this issue probably deserves a much longer post. But it’s an interesting question to me and I wanted to bounce it off of people.

Dehumanization and the Brain

Here’s a great article, via the Situationist:

A Brain’s Failure to Appreciate Others May Perpetuate Atrocities.

No, it’s not about how Autistic people are responsible for genocide. Although the actual published journal article is behind a paywall, from what I can tell the researchers (including Susan Fiske, on whom I have a huge intellectual crush) are not really talking about autism at all but rather the general population.

The study showed that Princeton undergraduates (that is, not a representative sample of the whole population, but also not a sample of only people with a particular mental disability) systematically shut off the social processing centers of their brains (the centers generally associated with empathy and social reasoning) when looking at or thinking about people whom they considered disgusting and less-than-human: people thought to be homeless, addicted to drugs, immigrants, or poor. The social areas lit up normally when participants looked at pictures of other individuals.

This suggests that bias isn’t just about thinking some people are bad, but in at least some situations it’s about thinking of people as not human. This, of course, is something that activists have been pointing out for a long time, but it’s cool to see that their phenomenological, introspective description of what’s happening matches up pretty closely with the neuropsychological data (see also the same researchers’ findings that men who scored high on “hostile sexism” turned off the social centers of their brain while looking at scantily clad women).

What’s more, when participants looked at pictures of dehumanized individuals, their brains showed activity in the areas known to govern disgust, attention, and cognitive control. The researchers suggested that disgust may play a role in the shutdown of the “social” areas of the participants’ brains.

The fact that disgust is part of the equation here is particularly interesting, because it suggests (in my mind) that the underlying cognitive process evolved as a response to contagious disease or vermin. Although most people at least intellectually understand that people with contagious diseases are still people, societies historically have shunned individuals who appear to have a life-threatening contagious disease (most notably people with leprosy), to prevent the disease from spreading throughout the population. Of course, doing this was to some extent against human nature because we naturally want to be kind to others who are suffering, so it was necessary to develop a way for disgust to trump empathy.

The discovery of sanitation has made this tactic totally unnecessary (although people perceived as having a life-threatening contagious illness are still frequently subjected to serious discrimination), but the same mechanism is still being applied to people who are considered unworthy of empathy for some other reason, particularly outsiders (the immigrants), people who are perceived as “diseased” (the substance abusers and to some extent homeless people, who are widely presumed to have some sort of mental illness), and people dealing with unjust situations that are perceived as intractable and not worth trying to fix (poor persons).

The possibility that people are more likely to dehumanize a person when they associate the person with the idea of disease has important disability and human rights implications. For example, it may explain why promoting “medical” explanations of mental disability can paradoxically increase stigma while decreasing blame. It explains why, whenever people try to distinguish “high-functioning” Autistic advocates from the “really autistic” people who are not-quite-human and need to be cured, they invariably end up talking about gross things the person does, like playing with poop.

At the risk of over-interpreting this study, I’d say it supports the arguments of activists who object to medicalizing terminology that characterizes a long-term disability as a “disease,” “disorder,” “illness,” or “epidemic,” especially when the “disease” in question is considered severe and “incurable.” While medicalizing terms may discourage society from blaming the disabled individual, the individual may also be considered less than human and thus less deserving of human rights such as self-determination, bodily autonomy, and full participation in the community.

It would also be interesting to see further research on exactly when this dehumanization response occurs and when it doesn’t, so that we can think of ways to prevent it. I suspect that people will show less of a dehumanizing response when the “disease” is perceived as either mild (such as the flu), presently curable (such as malaria), or the result of an injury and not a disease. This coincides with findings that people are more likely to empathize with individuals with mental illness if they are told that the person’s distress is caused by adverse life situations (that is, an “injury” model rather than a “disease” model). Moreover, one of the pictures used in the present study was of a “disabled” woman (they don’t say what the woman’s disability was), and this was apparently not a picture that elicited a dehumanizing response. My guess, without seeing the article, is that this woman’s disability appeared to have been caused by an injury (for example, a person who looks “normal” except that she is using a wheelchair) rather than a disease.

By analogy, would people be more likely to, say, view homeless individuals as fully human if they were told that homelessness is often a temporary life situation and that many people who experience homelessness ultimately find housing and have stable, fulfilling lives? Would people be less likely to dehumanize poor people if they were told that poverty arises from external social forces that can be changed? Or if they saw poverty as an injury caused by some sort of injustice?

I really like this sort of research. Understanding how people think about marginalized groups is a great step toward getting to think about them better. And I’m not self-deluded enough to think that anyone can truly understand how people think without doing some actually good research on the topic.

Self-Disclosure Angst

I just spent a long weekend up in Cambridge, MA, where I participated on ASAN’s symposium on the Legal, Social, and Ethical Implications of Autism Research. It was a great experience and I enjoyed the opportunity to meet some old and new friends. Discussion topics included bias in interpretation of research, issues in allocation of research dollars, ethical implications of genetic research and interventions designed to make individuals more compliant and less “autistic-looking,” and approaches to underdiagnosed populations such as adults and women. The symposium will be posted online soon (both transcript and video).

This was the first time I actually stated, in front of an audience, that I was Autistic (and, I think, only the third time that I said, at a public event, that I had any sort of disability). I was nervous at the time and am still nervous now. I don’t think I knew, when I signed up for this, that the whole thing would be webcast and put on YouTube for all posterity to see. That means I can’t really take it back. I had no plans to, but the finality of it is sort of frightening.

Moreover, for political reasons, like everyone there who was on the Autism spectrum, I referred to myself as “Autistic” (because, once people reach adulthood, it’s often very difficult to tell the difference between Autism, PDD-NOS, and Asperger’s, and making distinctions can create perceived hierarchies among diagnoses). But the rest of the world does think that there’s a significant difference between “autism” and “Asperger’s,” and might either:

1. Think that I’m way less capable than I am, even more so than if I’d told them I had Asperger’s;
2. Think I’m totally exaggerating or making up my disability because they think I’ve got “mild Asperger’s” and that autism is “way more severe” than that.

Finally, I am very self-conscious about how much I was fidgeting and stimming throughout the thing. I basically can’t sit still for more than about 20 minutes before I start fidgeting in some way. While I have some strategies for making this less noticeable in professional situations (like if I’m in a courtroom), I didn’t inhibit it that much while on this panel because, hey, they already know I’ve got a disability so it seemed silly to spend lots of effort concealing it.  That said, I tried to keep it from showing up on the webcast because I didn’t want potential non-allies seeing it. I had a laptop in front of me that was showing the live video feed and I tried to only fidget when the camera was not on me, but the feed was on a bit of a delay so sometimes it was a few seconds before I realized I was again visible on camera.

I understand that I am lucky in that I can conceal my disability somewhat, or at least the nature of my disability. Others can’t. Still, any possibility of losing that advantage is scary. I was particularly unnerved by the (Autistic) participant who kept asking how I could possibly be an attorney with “all of your social skills problems.” I don’t think I had any notable social issues at the conference (besides acting nervous when people were being very chaotic and loud while milling around, something I felt entitled to do given the context), so his assumption that I was horribly socially incompetent probably just came from the diagnosis itself. If that’s what my own community assumes about me, what can I possibly expect from everyone else?

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Edit to above: I should acknowledge that it also really felt good to be able to speak openly about my disabilities and still have my opinions heard, and to be able to sit on a panel without having to worry all that much about fidgeting, tapping, scratching, or whatever. If I didn’t find it somewhat rewarding, I probably would never have done it. Especially when I was there, and surrounded by awesome people who actually got it, it felt great to be authentic and open. Nevertheless, it was (and is) also pretty scary.

More on language

Putting aside for a moment the controversy over “person-first” language, I wonder if we can at all agree that the following expressions should be banished:

• “The disabled”
• “The mentally ill”
• “The homeless”
• “The poor”
• All other uses of mass nouns to describe minority demographics that are seen as the object of care and concern.

Even worse is the use of such mass nouns with possessives, like “the nation’s mentally ill.”

To me, these phrases turn groups of individuals into an undifferentiated blob that is to be somehow “dealt with” or otherwise cared for by the rest of the population (“population” is also a mass noun, but since “population” includes everyone in a particular place, it doesn’t come across as demeaning to me).

I can imagine cases in which that connotation wouldn’t be there. For example, people tend to view certain kinds of social movements as masses (“the Army,” “Anonymous,” “the resistance”). If you’re saying something like “the disabled should riot in response to proposed Medicaid cuts,”  that seems relatively fine because the use of mass nouns is based more on perceived cohesion than on lack of agency.

But more often than not, mass nouns are instead used to portray a group as a passive object of concern and charity. Consider, for instance, a line from this story on the warehousing of people with mental illness in nursing homes:

“As states have closed down mental hospitals, they’ve struggled to find housing for the mentally ill. In Florida, assisted-living facilities have become the de facto solution.”

Here, “the mentally ill” appears to be defined as people whose long-term residence was, until now, “mental hospitals.” It doesn’t include the large numbers of people with psychiatric disabilities who were living anywhere else, either independently or with their family or without permanent shelter. This kind of attitude makes it harder for people to “come out” as having a mental illness because they’re afraid of this sort of stereotype: “if you’ve got a mental illness, why do you have a job? Either you’re not really mentally ill, or you shouldn’t be working and living independently.”

Moreover, “the mentally ill” aren’t having trouble finding housing with help from the state, the state is having trouble finding housing for them. Overall the question the article seems to be asking is “what should be done about the mentally ill?”

It’s telling that, despite the fact that the reporter actually came into contact with one of the residents of the facilities mentioned in the article, the only quotes from her that make it into the article are a banal conversation in which she asked her son how her grandchildren were doing. The only reason I can see for including that conversation in the article at all are as an attempt to “humanize” her (“she has a family and even knows that they exist!”). But she wouldn’t have to be “humanized” in such a way if the journalist had actually discussed her as if she was a human being all along, including by allowing her to have an opinion. Imagine if he’d instead asked for her opinion about the place she lived and she complained about it in the same way that anyone else would complain about a similar living situation. Wouldn’t that make her seem even more “human”? You can program a robot to ask polite questions about people’s kids; it takes a living, feeling being to complain.

This is exactly the kind of attitude that I tend to associate with use of mass nouns: “the mentally ill are people just like us, except totally helpless. We should do something about them so that they have a place to be and are protected from abuse and mistreatment.” Not “it’s horrible that people with mental illness are forced to live in violent neighborhoods and facilities where their lives are controlled by abusive people. We (i.e. a coalition of people with mental illness and allies) should pass better laws to ensure that people who need housing assistance and services as a result of mental illness aren’t deprived of the right to live in a safe place and exercise control over their own lives.”

I don’t really care that much if someone says that I “have ASD.” I will correct someone if they call me “mentally ill” instead of saying I “have a mental illness,” but overall I won’t mind. I get a bit distressed if someone calls me “disabled” instead of saying I “have a disability,” since to me “disabled” sounds like I can barely do anything useful (like being a “disabled vehicle” or “on the disabled list”), but again, I can get past that if it’s sufficiently clear that that’s not what the person is trying to say. But I really hate when people use mass nouns.

Arkansas’ Rape Shield Undermined

Here’s another example of what can go wrong when judges are asked to draw legal conclusions about situations and experiences they don’t understand: <a href=”http://www.feministlawprofessors.com/2011/12/only-exception-arkansas-case-reveals-danger-states-undifferentiated-rape-shield-exception/”>a defendant in a sexual assault trial was able to raise the fact that a teenaged girl had previously accused another person of abuse, as evidence of her “credibility.”</a>

Networking for Aspies

I just spent two hours at an alumni event hosted by my law school, to see an old professor and partly to network.

It should not come as a surprise that I hate traditional “networking,” particularly in the context of social events. I am okay with talking to people one-on-one, but mixer-type events are sensorily overwhelming and most people’s approach to these events appears to be to scan the crowd, identify people to approach, and engage in short conversations with person after person, all while juggling both a drink and hors d’oeuvres and simultaneously scanning the crowd for people to approach next. Not a particularly disability-friendly environment.

All the same, it’s extremely difficult to advance a legal career without attending  and navigating these kinds of events. Even if you’re not trying to meet people, you can be sent to events like this just to provide a token presence for your organization. So I’d like to be good at it, to the extent that I can be.

There are a lot of books on networking, but there aren’t very many books on how to network if you’ve got a psychosocial or communication disability (including anxiety, Autism, whatever) or even if you’re just an introvert (and don’t even get me started on how inaccessible these things are to wheelchair users!). It’s not that I don’t understand the advice that mainstream books are offering, it’s that they tend to offer strategies that play to strengths that I don’t have, and don’t offer ways to use strengths that I do have. It’s like a human reading a book on swimming that’s aimed at seals – we can do it, we just can’t do it the way that seals do!

In case anyone’s interested, here are a few of my strategies. Some elements are pretty common strategies for these things, but others are sort of idiosyncratic:

1. Psych self up beforehand. Mentally rehearse what I will do upon arriving at the event, ways I’ll cope with anticipated issues, people I want to say hi to, things I’ll try to talk to them about.
2. Unless I end up in a conversation immediately upon entering, I go more or less straight for the food and drinks. Having a goal in mind helps me to deal with the sudden sensory overload. Here is where it’s important to have already scanned the room beforehand, because while traveling to the food and drinks you still have to be able to keep head up in case people are trying to get your attention. I do stop and talk to people if they say hi while I’m on my way to the hors d’oeuvres, but once conversation slows down I just mention I’m on my way to get the food and excuse myself, giving them an opportunity to either come with me or not.
3. #2 is particularly helpful because my favorite time to start conversations is in the food and drink lines. I’m dealing with a more limited number of people and there’s a more limited set of places they can be, constant eye contact is not expected, and the process of getting food can serve as a conversation starter (“What are these? Oh, those look good! Did you like those? I’ll have to try some. What’s your name? Where do you work?”).
4. Once I get my food and drinks, I like to find a table to sit at (or stand at, if it’s one of those places with standing-height tables). This is not what most people do – they usually like to stand and mingle. But I’m at my best while sitting. Sitting allows me to stop juggling my food and drinks and somehow makes it easier to deal with the noise, making it easier to hear and attend to what people are saying. It does usually mean that I will not end up talking to as many people, but the quality of the conversations will be much better, so it is all overall worth it.
5. When locating a place to sit, the ideal table is one with a few people I know and a few people I don’t know. Two to five people is best for me – it’s manageable, but ensures that there is already a conversation going when I sit down and that I can move on to talking to  Person #2 when your conversation with Person #1 dies down.
6. I talk shop. I’m sure this may not be the best way to reach some people, but fortunately, there are a whole lot of people out there who will be way more impressed by someone who talks shop intelligently than people who make scintillating small talk. Once you’ve established that you’ve met some minimum threshold requirement of pleasantness, extra pleasantness is no longer particularly important, so focus the rest of your energy on appearing intelligent. Talking shop doesn’t necessarily mean droning on and on about what you do; it can (and should!) also mean asking intelligent questions about what the other person does and showing real interest in their response. In fact, I try to talk to people more about what they do than what I do, unless they seem extra interested in my work for some reason. I’ve really hit it off with some people at networking events this way!
7. Dressing well, with only one or two “interesting” accessories, actually helps a great deal (obviously this advice is a bit gendered, but I imagine that it translates to the men to some extent as well). I actually think this step is more important for people with social issues than it is for people without social issues. Although knowing exactly how to dress for a given event can be difficult for a lot of Autistic people, but I’ve pretty much gotten the hang of how to dress for these things (thanks, Corporette!), and it’s the most effective thing that I can do in advance to make things go more easily for me once I get there. My perceived social skills are about 150% better when I actually bother with jewelry, makeup, and a well-put-together ensemble (with real  attention to both detail and gestalt effects, like choosing earrings to match one of the colors in the outfit) as opposed to just something acceptable (“some suit or skirt plus some shirt that kinda goes with it”). People smile more and are more friendly, making it easier to keep a conversation going and alleviating anxiety; even when I have a semi-visible tic, they actually seem less likely to notice if I otherwise look very professional. Plus, having one or two interesting accessories can help start conversations (but having too many appears to start more conversations about you than with you).
8. Despite #7, I avoid clothing that is uncomfortable or shoes that are hard to balance on if it will interfere with my ability to talk to people effectively. I never wear things that are itchy or uncomfortable no matter how good they look, because they will be distracting and make me shift around awkwardly. I often err on the side of nice flats or chunky, low heels because the advantage of wearing stiletto heels (which are the norm, apparently) is completely outweighed by the potential embarrassment of falling down. People respect women who dress practically; nobody actually seems to notice or cares that I’m not wearing heels, and if they do notice they tend to assume that I have a good reason (such as a medical issue that prevents me from wearing heels) and consider me sensible for prioritizing health over fashion.
9. I force myself to follow up and email people whose contact information I got, just to say that I was happy to meet them and hope to see them again sometime. This can be hard, but it’s important to people. It lets them know that “let’s keep in touch” was not just something you said to be polite as you left the conversation.

What do you do? Have you read any books on this that are helpful? I think it would be great to compile a resource on networking and other professional tips for those of us who have a hard time with this sort of thing. Not the sort of tips that explain in great detail what the “rules” are (although that can be valuable to people as well, I can usually figure out the rules by reading mainstream materials on the topic), but actual ways to compensate for weaknesses and play up strengths.

Fixating

I know that the ability to get really absorbed in a topic of interest can be adaptive and that non-Autistic people tend to exaggerate how problematic our interests are, but…

I actually kinda hate my episodes of hyperfocus. I don’t like how they feel. I lose track of time and my daily obligations. I don’t eat when I should. I can’t attend to the things that I actually have to attend to. I have a really hard time carrying a conversation during these periods because I can’t attend to what the other person is saying unless it’s about the thing I’m focused on.

Admiral Ackbar says "It's a Trap!"

I don’t like that there is so little middle ground, for me, between “not paying attention” and “trapped in episode of laser-like focus.” I hate that all the ADHD medications I’ve tried simply make me more likely to end up on the “laser-like focus” end of the spectrum, without actually widening the middle.

I hate hyperfocus episodes so much that I have spent most of my adult life desperately trying to avoid things that I’m too interested in, unless those interests are somehow “useful.” I avoid looking at or touching jigsaw puzzles. I refuse to ever even try MMORPGs because I am afraid of how long I’ll spend playing them. I am pretty obsessed with a particular singer, Morrissey, but when a friend of mine gave me a book about him I had to put it down only a little bit in because it was interfering with my ability to think about anything else. I refuse to pick it back up, ever again.

I like my most recent blog post, but I hate that I just spent four hours writing it.  I didn’t have anything else that I needed to do today, but it’s not what I wanted to do all day, and I hate sitting in a chair for that long when I don’t have to.

I understand that my hyperfocus can be adaptive – I can sometimes switch them on on purpose, which has helped me do well in school – but I would still like to have more control over it. I sometimes find myself procrastinating on tasks because I know they’ll trigger my hyperfocus and therefore take too long and I don’t have that much time. I avoid things that I like for the same reason. One of my biggest challenges at work is increasing my ability to write things quickly and concisely, and increasing my ability to switch back and forth between tasks. I’ve actually gotten pretty good at it, but today seems to have been a “bad day,” and that is frustrating.

People-First Language

This is my first entry using Dragon NaturallySpeaking. My apologies for any dictation errors that I don’t catch – if you catch any, please alert me in the comments.

Since I’ve started reading Autistic blogs, I’ve been surprised by how many posts people have written about people-first language (most recently Autistic Hoya‘s and Kassiane‘s posts). Autistic individuals prefer “Autistic people,” in contrast to most parents of Autistic individuals, who prefer “people with autism.”

It’s not that I’m surprised that self-advocates would take issue with the terminology that other people use to refer to them. This is pretty common among minority rights movements, including disability rights movements. What’s interesting is that the Autistic community has come out on the exact opposite side of the “people-first” debate than almost every other disability community.

I have been a disability rights self-advocate longer than I have been an Autistic self-advocate and have done a lot of cross-disability work, and have found that most people with mental health disabilities, mobility impairments, learning disabilities, intellectual disabilities, and other neurological disabilities generally use people-first language, and many – especially people with psychiatric and intellectual disabilities – find any other kind of language offensive. Prominent cross-disability organizations such as AAPD (which has a good history of having people with disabilities in decision-making positions), use people-first language. In fact, people-first language was initially spearheaded by self-advocates with intellectual disabilities, as is described here. Of course, no community speaks with a single voice on this or any other topic, but there does seem to be an overall consensus here. So far, the only disability communities that I have seen that actively reject people-first language are the Deaf community, Autistic community, and some parts of the Blind community (generally, the NFB hates people-first language, and the ACB apparently supports it but seems not to actually ever use it; both organizations are headed by Blind individuals, but they almost never agree on anything).

This is not to imply that the Autistic community is somehow wrong about the terminology that it wants to use. But it does mean that this isn’t just about a bunch of “allies” who think they know better than Autistic individuals what terms to use. They got the idea from other people with disabilities who strenuously and consistently object to the use of any terminology other than “people-first.” I’m not defending any particular person, but you can sort of understand how it would be confusing for people to hear different groups of disability self-advocates making diametrically opposing demands on what language to use.

This confusion can be pretty easily resolved by simply concluding (as I have) that the correct approach is to assume that, to the extent that there appears to be a mainstream consensus within a community of people with disabilities, that community is correct about the language that is most respectful. Thus, when speaking generally, we should say “Deaf people,” “people with mental illness,” “Blind people,” “people with intellectual disabilities,” “Autistic people,” “people with Tourette’s Syndrome,” etc. (Moreover, if one encounters an “outlier,” their choice should also be respected; if someone makes known that they want to be called a “person with ASD,” then call them that when talking to or about them.)

It would help, though, if we could come up with some sort of coherent explanation for why the Autistic, Blind, and Deaf communities come out differently from other disability communities. Assuming that each group is actually correct about which language makes them feel respected as human beings, why does “intellectually disabled person” offend people with intellectual disability and “person with autism” offend Autistic people? If Autistic people’s interpretation of “people-first” language is to be believed, you’d think that people with intellectual and psychiatric disabilities really like thinking of their disability as an unfortunate, incidental affliction that should be ignored where possible; if people with intellectual disabilities’ interpretation of “disability-first” language is to be believed, you’d think that Autistic, Blind, and Deaf people don’t really think of themselves as people and really want to be seen as only Autistic/Blind/Deaf without any other relevant features. I doubt either is (entirely) true. What’s the actual difference at work here?

I am sure that I’m not the first person to ask this question, but in the limited time that I’ve been reading Autism blogs I haven’t seen any accounts of this phenomenon that, in my opinion, actually explain it.

One proposal, for example, is that other disabilities are acquired later in life, and the people with those disabilities have a sense of who they are “without” that disability and may even hope to be cured. But this doesn’t describe all of the disability groups that prefer people-first language: most people with intellectual disabilities have had their intellectual disability all their lives, and all of the self-advocacy organizations of people with intellectual disabilities that I’ve seen focus entirely on access, self-determination, and independent living, not on “curing” intellectual disability. In fact, very few disability rights organizations say anything about “cure,” especially if they’re controlled by actual people with disabilities (notable exceptions include disabilities that have the potential to be fatal, like diabetes and cancer, and disabilities that are extremely unpleasant to have, like depression). And many Blind and Deaf individuals acquired their disabilities later in life, yet those communities tend to reject people-first language. So overall, whether a disability is late-onset and whether people with that disability want to be “cured” seem not to be correlated with whether people with that disability like people-first language.

Another theory is that, unlike other disabilities, Autism is inseparable from one’s identity. It’s true that people with disabilities who are advocates of people-first language do tend to say things like “we are people first and our disabilities come second,” thus implying that they are somehow separable from their disabilities. Yet it’s not entirely intuitive which people will argue that they’re separable from their disabilities and which will argue that they aren’t. For example, intellectual disabilities intrinsically affect how people think and are present from birth; however, people with intellectual disabilities started the people-first movement and frequently see their disabilities as a secondary part of who they are. On the other hand, deafness is often acquired later in life and has no direct effect on the brain, but many Deaf people will say that Deafness is a core element of their identity, in large part because the Deaf community has its own language and culture. The National Federation of the Blind, for its part, doesn’t seem to have an opinion on whether blindness is a part of someone’s personality and mostly just thinks “people-first” language is gimmicky and pointless.

It may also help to look at terminology in its historical context. In my experience, the communities that focus most on people-first language are the intellectual and psychiatric disability communities, so it’s reasonable to conclude that there’s something about the experience of having those particular disabilities that makes people-first language particularly appealing. (There is also a rather strong cross-disability opposition to the use of mass nouns (such as “the disabled”) and adjectives-as-nouns (e.g., “quadriplegics,” as opposed to “wheelchair users” or “people with mobility impairments”) (here again, the Autistic community is pretty much an outlier in their general acceptance of the term “Autistics”).)

Many people with psychiatric and intellectual disabilities – including myself – are particularly concerned about is the fact that, once you were labeled as “a schizophrenic,” “retarded,” or “mentally ill,” it was assumed that every opinion or desire you expressed was simply a product of your mental disability and therefore invalid. Linguistically separating the disability from the person through people-first language seems aimed at undermining this assumption. So it’s not that intellectual/psychiatric disabilities don’t influence how you feel and think – by definition they do – it’s that people feel the need to minimize this fact in order to be seen as having valid feelings and opinions.

Of course, the Autistic community experiences the exact same problem: people are constantly ignoring Autistic people’s opinions and feelings based on the fact that they’re Autistic. But for one reason or another, the Autistic community seems to be fine with saying “of course I only think that/want that/feel that way because I’m Autistic. So?” while people with psychiatric and intellectual disabilities have a harder time challenging the idea that their disability is about not understanding things, thinking things that aren’t true, and feeling things that aren’t appropriate (the notable exceptions, such as MindFreedom International, also tend not to use people-first language, preferring terms such as “Mad” or “psychiatric survivor”).

This is more or less borne out by my experience as someone on the autism spectrum who also has been diagnosed with psychiatric disabilities. My OCD diagnosis is based on many of the same things – love of repetition, distress on being interrupted, and need to move about in order to think -that underlie my identity as Autistic. Regardless of whether you consider them “OCD traits” or “Autistic traits,” they’re just as much a part of my personality.  And I still identify as having OCD and being part of the psychiatric disability community, based in part on those traits. But I hate being called “mentally ill” as opposed to “a person with a mental illness/psychiatric disability,” because I feel like it automatically devalues my feelings and opinions.

But still… why, given the fact that people devalue the opinions of Autistic people as well, does it feel awful to be called “mentally ill” and not “Autistic”? It may be relevant that while almost everyone – with or without a psychiatric/intellectual disability – has the experience of being called “retarded” or “crazy” by someone who didn’t want to listen to what they had to say, it’s much less common for the ideas of non-Autistic people to be casually labeled as “autistic” by people who don’t like what they think (one exception that I’ve seen is people’s use of the term “autistic economics” to refer to economics that doesn’t take into account economic actors’ feelings and experiences). But I’m not sure that’s the whole difference.

I really want to see what other people think about this, particularly people who prefer people-first language for some or all of their own disabilities. What makes people-first language preferable in some contexts but not in others?

More on Misinterpretation of Social Psychology

I sort of briefly mentioned in my last post how people (including the researchers themselves) tend to misinterpret social psychology. Here’s a pretty good (and only tangentially autism-related) example:

Researchers at the University of Nebraska recruited seventy-two undergrads to participate in a study. The undergrads were told to look at a little picture of a face at the center of the computer screen and not move their eyes from that point. Periodically, a little black circle would appear either to the right or to the left of the face, and the undergrads were told to press the spacebar as soon as they saw the circle. The eyes in the face randomly alternated between looking to the right and looking to the left, but the undergrads were told that the direction of the eye gaze was completely unrelated to where the circle would appear.

After this test, the undergrads were given two questionnaires designed to elicit information about the subjects’ political beliefs. The questionnaires asked the students for their opinions about abortion, gay marriage, and statements like “it is better to follow authority or it is better to question authority.” Students were also asked to identify themselves as either liberal or conservative. The researchers used an algorithm to rank students along a liberal-conservative axis based on their answers to these questions, then put the most “liberal” half into the “liberal” category and put the most conservative half into the “conservative” category.

Then the researchers performed a statistical analysis examining how the response time (how long it took the students to press the spacebar after the circle appeared on the screen) was related to the direction of the cartoon face’s eye gaze and the students’ political beliefs. They found that, overall, students were faster at detecting the circle when the face was looking in the circle’s direction than when the face was looking away from the circle; this makes sense since people generally instinctively follow eye gaze (even when, as in this case, they are explicitly told not to and that the eye gaze is irrelevant). However, they also found that people categorized as conservatives were much less influenced by the eye gaze of the cartoon face than liberals were; in fact, they showed no statistically significant delay in seeing the target when the face was looking away from it.

This is a neat result, and – assuming that the data aren’t falsified – there’s clearly something going on there. But scientific experiments are really only as useful as the theory that explains their results; otherwise, all you know is the not-very-useful fact that students at the University of Nebraska who respond a certain way to a questionnaire are more or less likely to be influenced by the eye gaze of a cartoon – which they were told was irrelevant – when trying to detect a circle on a screen. We’d like to be able to say that this says something about how one’s political orientation influences your thinking, or vice-versa.

In this case, the researchers suggested that conservatives’ ability to ignore eye gaze (and, since they were explicitly told that eye gaze was irrelevant to their task, I’m going to call this “ability to ignore eye gaze” rather than “failure to follow eye gaze”) was evidence of their “individualist” temperaments (interestingly, they considered the possibility that conservatives may have had more autistic traits overall than liberals, since Autistic individuals tend not to have as strong an instinct to follow eye gaze, but rejected this because there were more women on the conservative side than men and men are more likely to show “autistic traits” than women!). They concluded this even though:

1. As noted above, the subjects were explicitly told that the eye gaze was irrelevant, so it’s not like they simply chose to ignore it on their own;
2. The researchers cited absolutely no evidence that conservatives were more “individualist” than liberals, other than the fact that conservatives are more likely to like Ayn Rand;
3. They didn’t include, in the experiment, any questionnaire designed to directly detect individualism; and
4. In two of the three items in the questionnaires that are explicitly mentioned in the paper, the “conservative” answer is not the more “individualist” answer but rather the one that affirms the importance of prevailing social norms (for example, I can’t think of an “individualist” reason to oppose gay marriage, and I’m guessing that the “conservative”-coded response to “it is better to follow authority or it is better to question authority” was “yes”). For the third question they mention, which concerned respondents’ feelings about abortion, you can at least imagine a person giving the “conservative” answer on individualist grounds (for example, that the fetus is an individual with rights), but the “liberal” answer is just as likely, if not more, to be based on individualist thinking as well.

Overall, it just baffles me that anyone would try to explain this sort of experimental result based on the supposed “individualism” of one group of people even when part of what got them placed into that group is their anti-individualistic responses to a political questionnaire. Based on my read of the study, it’s just as likely that “conservatives” were able to ignore eye gaze because they were less individualist: they heard the researcher (an authority figure) tell them that eye gaze was irrelevant, and they believed it, so they ignored eye gaze.

Or you could conclude that conservatives have more self-control when it comes to following directions than liberals do. Or, if you wanted to go way out there, it’s even possible that this effect actually does have something to do with where people fall on the autism spectrum: maybe in Nebraska, autism doesn’t correlate with political beliefs among men, but does correlate with political beliefs among women, such that all of the women with autistic traits affecting gaze following were clustered in the “conservative” category and threw off the results. This seems pretty unlikely to me, but it wouldn’t surprise me if someone found it plausible.

Hopefully I’m not the only person who find these researchers’ proposed explanation pretty weak. The paper that the University of Nebraska published on its web site (“The Politics of Attention: Gaze cuing effects are moderated by political temperament” (text-encoded PDF)) appears not to have been published in a peer-reviewed journal yet, and it’s possible that peer reviewers would make them tone down their conclusions before publishing. Nevertheless, it’s not unlikely that the researchers deliberately publicized their findings before going through peer review so that they could come up with an “exciting” spin on their findings and get publicity from popular science bloggers (see, e.g., i09‘s post about this).  These days you don’t even have to get peer reviewed before going to the news with overblown descriptions of your research findings.