Please, autism researchers, study these.

Quite a bit of autism research is what I would call, to put it delicately (as in, I am neither screaming nor swearing at it), abled nonsense. I definitely needed to know that my asexuality as an autistic AFAB is a testosterone-related disorder. I also needed to know that I only think I'm trans (nonbinary to be specific) because autism is an extreme male brain. And it is of the utmost importance that I know I am incapable of humor in any form, but especially sarcasm. Autistic satire is definitely not a thing, right?

Oh, wait. All of that is abled nonsense. So is the idea that the optimal outcome is a loss of diagnosis, by the way. I'm most able to do the stuff I care about when I am visibly autistic rather than spending energy on not being so. Dani briefly achieved so-called indistinguishability, an older "optimal outcome" and it was not worth it. (Also I'm the friend.)

I would like to see research that is not abled nonsense. I especially would like to see more of this research being done by autistic people, because no, I don't think we need neurotypical people interpreting the results in order for them to be valid. I'm with Nick Walker here: when we depend on less-marginalized researchers to "discover" our hard-earned truths, we're reinforcing the idea that the knowledge we've figured out for ourselves as a community isn't valid. Which communities get to have valid knowledge?

That said, there are things I'd like to see researched more. Not necessarily in the current structure (because let me tell you, I expect someone like, oh, nearly any non-autistic autism researcher who presented at the Coalition on Autism and Sign Language where I threw myself into a wall repeatedly, to make a complete mess of the topic.) And preferably by autistic people with experiences relevant to the topic.

1. Inconsistent speech and AAC support for autistic adults.
   
   I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
   
2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.
   
   Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.
   
   So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
   
3. Burnout.
   
   After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.

"Blind imagination" neuroscience press release

For anyone new to the aphantasia discussions: It's a fancy word for not visualizing, or as I've tended to describe it, not having a mind's eye. I don't picture characters or scenes when I read books, for example.

As a rhetoric person and disability studies person, I looked at how we talk about aphantasia, in three parts. (Part one, part two, part three). As a neuroscience student, I wrote about one of the articles (Zeman et al, 2010, the case study) in terms of significance. And yes, some of the results are things I could totally have told you myself. Like the fact that "mental imagery" tests such as rotation (check if two block structures with angles are the same or not) can be done in ways other than rotating an image of the object. I know that because I don't view such images in my head and I'm good at the task. Testing everything is how science works, and trying to figure out what someone is doing rather than just what they aren't doing is still handy. So here it is!

A research team in the UK has shown the potential for dissociation between the experience of visual imagery and performance in tasks typically associated with visual imagery and visual memory in a case study. The patient, a 65 year old retired surveyor referred to as MX, reported the sudden loss of his ability to visualize. However, he retained the ability to complete tasks typically associated with visual imagery and visual memory, including mental rotation tasks.

The authors did a series of tests both on MX and on a group of controls of similar age, IQ, and professional backgrounds. These tests included assessments of general intelligence, memory, executive function, visual perception, subjective vividness of visual imagery, and imagery abilities. MX scored significantly lower than controls on subjective assessments of visual imagery. However, his scores in the other tests were not significantly different from that of controls. In the fMRI experiments, MX showed similar areas of activation to the control participants while viewing images. However, MX showed significantly different activation patterns when asked to generate faces. Rather than activating the posterior visual network, MX showed prefrontal activation in areas associated with many executive tasks.

Further behavioral testing was conducted to test if MX was using alternative cognitive strategies. The researchers gave MX variants of Brook's matrix and verbal tasks, along with mental rotation tasks. Here, MX's performance differed from typical patterns. While typical controls consistently perform better on the spatial Brooks task than on the verbal one, MX performed better on the verbal task. When asked to perform the typically visuo-spatial version of the task with verbal or visuo-spatial interference, MX showed no significant difference in performance between no distractor and visuo-spatial interference. However, his performance was significantly lower with the verbal distractor, again in reverse of the typical performance pattern. On mental rotation tasks, MX showed no impairment in correct performance. However, he consistently required more time than controls and showed a different relationship between angle of rotation and time required from the controls.

Both the behavioral and fMRI testing indicate the use of alternative cognitive strategies in order to perform tasks typically associated with visual imagery. On most tasks, these alternative strategies yield similar levels of accuracy to controls with typical visual imagery abilities. The case of MX provides insight into alternative ways of completing typically visual tasks. His performance indicates that mental imagery is not essential to tasks typically associated with it, making it less clear that mental imagery is the subject of mental imagery tests. It also indicates that reliance on the mind's eye in decision-making as suggested by Kosslyn is not universal. In addition, this case study may provide insight into the cognitive functioning of a small but significant subset of the population who report no mental imagery. Surveys dating back to 1880¹ show a group that report never having experienced mental imagery, alongside documentation of prior cases where imagery is lost. Further study could determine if similar strategies are used by this population, and what cognitive differences, if any, this is associated with.²

1  Galton, Francis. "I.—Statistics of mental imagery." Mind 19 (1880): 301-318.

Also relevant is: Faw, Bill. "Conflicting intuitions may be based on differing abilities: Evidence from mental imaging research." Journal of Consciousness Studies 16.4 (2009): 45-68.

2 Spoiler alert! This happened to some extent in Zeman, Adam, Michaela Dewar, and Sergio Della Sala. "Lives without imagery–Congenital aphantasia." Cortex 3 (2015). This case study got written up in Discover, then some people who have never had subjective mental imagery [like me!]  contacted the authors. Then people saw the follow up, some of whom also contacted the authors. The 2015 letter was actually the first one I found, followed by the two commentaries on it. [They wonder if there may be a connection with faceblindness, or prosopagnosia, which I also have. My brain. It is multiply interesting.]

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No Boundary Thinking Seminar Reflection 1

This semester, I'm took a seminar on no-boundary thinking. Which sounds like a fancy word for what I often try to do as a vaguely disability studies like person: focusing on defining an issue and addressing it from any methods that work and not worrying about (often not knowing) what fields those definitions or methods come from. (To my professor from the seminar: Congratulations, you found my blog.)

So here's my first reflection post. Bracketed things were not in the original reflection that I turned in, and have been added since.

[So, at the start, we need to know what no-boundary thinking is. It's kind of what it sounds like: we're going to ignore the lines between disciplines as much as possible.] Huang et. al. (2013) discusses no-boundary thinking as thinking where problems are defined without being limited to a single discipline or group of disciplines, while the knowledge used to define and solve the problem can come from a variety of disciplines. Dr. Brian Dewsbury mentions that no-boundary thinking doesn't necessarily mean bringing more people on to a team just to have them – just because a given discipline has some bearing on a problem, that does not mean we must have a person who specializes in the discipline on the core team. If we did, teams could become overly large and difficult to coordinate, because many disciplines will have information that relates to any given problem. Stakeholders are brought up, and a fellow student says she is reminded of participatory research.

There are connections here: in participatory research, the idea is that affected communities 1) deserve a voice in discussions of problems that affect them, and 2) have useful information related to solving those problems. However, there is a risk of having people just to have them in participatory research – depending on when community members are included the research process, they may have little input in defining research questions, may be left out of data analysis and interpretation, and may generally find themselves used as a sign of community input rather than an actual source of expertise or information. [As opposed to how we should be defining and leading this thing. If anyone's job is "source of expertise for getting the thing done but not really deciding what needs to be done" it should be the outside academics studying the community.]

This problem in participatory research resembles a similar problem in interdisciplinary research, where the input from any given discipline is limited to where the people running the project think that discipline belongs, rather than appearing everywhere it could be helpful throughout the project time line. In both cases, the problem is with boundaries, whether between identities (academic, policy maker, or community member) or between disciplines. The problem is also with the assumption that people fit into exactly one of these boxes – a scholar on fisheries whose family depends on fishing does not fit into precisely one position. When I do research related to disability, I don't either. [I'm Disabled. I'm Autistic. I'm also legitimately a Disability Studies scholar, and I'm starting to be a researcher in assistive technology.] In both participatory and interdisciplinary research, the no boundary idea that we should be defining and approaching problems in ways that are “not limited by disciplines, traditions, vocabularies, or even technologies” (Huang et. al. 2013, p. 2) would be helpful.

Work Cited

Huang, X., Bruce, B., Buchan, A., Congdon, C. B., Cramer, C. L., Jennings, S. F., ... & Moore, J. H. (2013). No-boundary thinking inbioinformatics research. BioData mining, 6(1), 1.

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#Rhetoric and #Aphantasia, 3/3, Zeman et al.

I'm writing some more about aphantasia, or no mind's eye. Part 1 is here, and Part 2 is here. I think this is the last rhetoric discussion about aphantasia for now.

So now, after looking at some modern/mainstream articles and some older stuff – Galton's 1880 paper and a tracing of how people have thought about mentalimagery/the lack thereof by Bill Faw, I'm going to look at how Adam Zeman, those working with him (Michaela Dewar for both the papers where the word aphantasia is used, Sergio Della Sala for all three papers I'm looking at, and Lorna A. Torrens, Viktoria-Eleni Gountouna, David J. McGonigle, and Robert H. Logie for the loss of imagery paper that wound up inspiring the later aphantasia papers), and those reacting to their work in formal academic settings. I think of Zeman as the main person mostly because he tends to be the one to talk to journalists. (Isn't that how it goes?)

I start with the 2010 paper in Neuropsychologia. I did a "press release" report on this one for my neurobiology class this semester, which I may wind up sharing here too. (Note that this was published after Bill Faw makes his hypothesis about imagery-like processes at the subconscious level, so any evidence to the contrary was not available to him when he was writing.) In the introduction, the authors start off using “most people” instead of “people” when describing the ability to “call to mind an image that is less vivid than the original but has a visual 'feel.'” (145) This might seem like a small thing, but it's not. All too often, researchers talk about what all people do and implicitly exclude folks who don't do that from humanity. It's enough of a problem to have led to the paper, “On Not Being Human.” Pitfall #1 avoided.

The authors mention a debate over the importance of (visual) mental imagery in cognition, whether it plays a key role (maybe even a required role) or whether propositional/factual knowledge is sufficient for imagery tasks. As someone who doesn't experience any (visual) mental imagery, I know that there are other ways to do it, but the thing about scholarly discourse is that everything needs to be studied and checked. At least they're asking questions about how folks without mental imagery do the things rather than insisting that if we can do things like recognize rotated objects we must actually have a minds eye. The authors then propose that there are several ways to do imagery tasks at the cognitive level. Hi, cognitive (neuro) diversity, and that multiple ways might be available to “healthy adults.”

(Now what does it mean to be healthy here?) In this case, I think it refers to the fact that the in cases the authors know about where mental imagery is not a thing, it had been a thing before (so they recognized that there was a change instead of it being a normal state like it is for me) and then when it stopped being a thing, it was an event that also led to trouble with the imagery tasks usually used to check if a person can visualize things or not. They were also related to injuries or illnesses. Then MX shows up having lost his ability to visualize (again, not a thing I'd be able to show up with because I'm totally used to not visualizing), and he can still do these tasks. Mostly. There's some difficulty immediately following the loss of visualization ability, and a decrease in these difficulties as time goes by. The study authors interpret this as initial difficulties followed by development of a verbal strategy.) This upsets the theory that visualization is needed, though not necessarily the one that it's related or used for most people. The authors want to know how, which wasn't examined in the cases reported in 1954 where the ability to create certain kinds of mental visualizations went away after injury but the ability to do certain things visualizers would expect to be related weren't affected. (Reading and writing after not being able to visualize recently viewed pages, which wait people visualize pages? Also drawing building plans after not being able to visualize new building plans.) Brain, the author of the 1954 paper, noted that this must mean disconnection between the “visual imagery” related tasks and actual visual imagery was possible.

Despite the focus on understanding what MX does rather than what he doesn't do (the research team even goes into the fMRI part expecting that he's going to show different activation patterns than the neurotypicals do) they do talk about abnormal patterns of activation and healthy controls. That is, there's a definite “normal” mind that the authors are working with for this paper.

Moving on to the 2015 letter to the editor in Cortex where the term “aphantasia” is finally coined, we see a different tone. We're still talking about “imagery generation disorder” for the 65 year old who suddenly stopped having mental imagery, and we're still talking about a “condition”, but there are differences. Rather than assuming visual imagery is an everyone thing, it's now described as a most people thing. They also suggest that this is going to be a variant, comparing it to synaesthesia (not usually pathologized!) and prosopagnosia (kind of pathologized.) Of course, Zeman et. al. are calling both of those things disorders. So. It's a bit of mixed bag. The authors are replacing clearly pathologizing terminology like “defective revisualization.” They're also doing better than most of the journalists at not assuming that their readers all have mind's eyes. Quite a few of the journalists write like they think everyone in their audience can visualize, and that the aphantasiacs are not their audience. Really, 2% of the population is significant and we're probably more likely to be reading an article about aphantasia than the visualizers are. This is a bad assumption, which Zeman et. al. aren't showing.

Then, “Reflections on Aphantasia”, part of a 2016 discussion and again in Cortex, shows a distinct clinical focus, as one would expect in an academic journal focused on the relationship between the nervous system and cognition using neurodivergent people for contrast. (Both acquired and developmental.) The authors point out that calling mental stuff organic or functional doesn't quite work as a divide. (Functional sounds a lot like an academic version “all in your head” to me, in that functional apparently implies reversible? This idea is one of the things the authors are criticizing.) They point out that a range of factors can affect the level of visual imagery, including certain medications, depression, brain injury, and PTSD. They argue that lifelong aphantasia is unlikely to have such a source (and is therefore not pathological? Zeman is pretty insistent that aphantasia is not a disorder when interviewed. Or at least that congenital aphantasia isn't a disorder.) They also say that other psychiatric factors should be taken into account when assessing someone who claims aphantasia. It sounds like they're trying to have their cake and eat it: aphantasia isn't a disorder, they're born this way. But here's all this disordered stuff that could also cause it, and if you experience/complain of aphantasia because of those things, it's a disorder. So maybe it is?

I'm a bit reminded of the “we're not crazy” discourse around asexuality and around being transgender. Some of us do have pathologized stuff going on in addition to being asexual/transgender/aphantasiac. (Hi, I'm Autistic, asexual, nonbinary, and aphantasiac!) That doesn't mean the other states are somehow invalid or pathological, even if they are related to or directly caused by my being Autistic.

At the end of it all, I'm thinking people aren't quite certain how to place aphantasia. Is it a disorder? A disability? A sign of something else that's one of those things? Just a natural variation that we legitimately don't need to pathologize? (Even if it comes with other stuff we tend to pathologize?)

I lean towards variation that we don't need to pathologize, even if it comes with (or is caused by) stuff we tend to pathologize. I also lean towards disability under certain circumstances. In environments that are very specific about wanting visual methods to be used, aphantasia could well be disabling. That doesn't mean other people are talking about it that way. We're currently getting a mix where folks aren't quite sure how to write about it, I think.

Works Examined

Zeman, Adam, Michaela Dewar, and Sergio Della Sala. "Lives without imagery–Congenital aphantasia." Cortex 3 (2015).

Zeman, Adam, Michaela Dewar, and Sergio Della Sala. "Reflections on aphantasia." Cortex 74 (2016): 336-337.

Zeman, Adam, et al. "Loss of imagery phenomenology with intact visuo-spatial task performance: A case of ‘blind imagination’." Neuropsychologia 48.1 (2010): 145-155.

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Scholarship in the Digital Age Notes

And yet another "Alyssa reads a thing, here's sier notes." Yes, these are books I've been reading as I work on various chapters and papers and proposals as an academic person. 

Citation for the book, as per usual.

Borgman, Christine L. Scholarship in the Digital Age: Information, Infrastructure, and the Internet. Cambridge, MA: MIT, 2007.

And here's my notes!

In the first chapter, Borgman notes that much of the content of the Internet is unverified/unverifiable stuff like blogs and list serv discussions. As more and more academics blog, I question both the unversified nature and the unverifiable nature of these forms of media- blog posts with references exist- I know because I write these.

“Students acquire an insatiable appetite for digital publications, and then find on graduatiion that they can barely sample them without institutional affiliations” (3.) This is a huge, huge problem for independent scholars, especially poor independent scholars. And guess who's more likely to be an independent scholar rather than have affiliations? Exactly the same people who face barriers to participation in academia.

Nevertheless, making content that was created for one audience useful for another is a complex problem. Each field has its own vocabulary, data structures, and research practices. People ask questions in different ways, starting with familiar terminology. (10.)

Basically the quote I just copied in above. This is a big argument in favor of the disciplinary versioning with discipline-nonspecific version approach, though it also raises a question: what is the current intended audience, and should that be the indended audience? In conversations about disability, disabled people need to be part of the main intended audience, not an add on.

“Journal articles are more valuable if one can jump directly from the article to those it cites and to later articles that cite the source article” (10.) Oh hey, the Chinese journal system I used to download a ton of papers when I was in Tianjin can do that. It was useful, except for the part where a lot of papers didn't actually cite anyone...

Wissenschaften is apparently a German word that covers sciences, social sciences, and humanities. That is really cool. Also, cyberwissenschaften for the cyber kind. That's cool, but it's German and that means most USAians won't really know or use it. Sads. Cyberscience: Research in the Age of the Internet by Nentwich apparently talks about this some. Woo linguistics but sads because English.

I think I need to find William Gibson's novel, Neuromancer.

“Notions of scholarship, information, and infrastructure are deeply embedded in technology, policy, and social arrangements” (33.)

“Underlying the technical and policy developments are theories and philosophies about what is socially acceptable and appropriate” (33.)

“Scholars in the twenty-first century continue to use those channels [in person, by phone, and by mail,] while also communicating via e-mail, blogs, and chat” (47.) Ok so blogs are unverfied and unverifiable, but also are a way scholars talk to each other? That makes SO MUCH SENSE. Oh wait, no, it really doesn't.

Oh hey, problems with peer review. Ibby talked about those some in the cognitive accessibity and why we should share piece on the feminist wire, too. Lets see what Borgman's got to say.

“Double-blind reviewing is difficult to maintain, especially in online environments, as authors can be identified by searching for similar work on the topic of the paper.” (61.)

Cronin, B.- interesting author. The Citation Process: The Role and Significance of Citations in Scientific Communication (1984), The Hand of Science: Academic Writing and Its Rewards, (2005.)

Peer review is a social process, with all the problems that can come from social processes.

Open posting and review of papers where anyone may comment brings up the question of who is a peer. The system used to be pretty well closed, with authors and reviewers being the same set of people. (I'm totally in favor of questioning who is a peer, the current system is super elitist. Not sure what Borgman thinks of blowing it open like this, I think she's trying to sound unbiased here?)

“Reviewing can be a conservative process that is more likely to reinforce the norms of a field than to identify significant breakthroughs. Articles that are ultimately highly cited often have difficulty getting published.” (62.) She cites McCook 2006, Meadows 1998, Nature 2006, Shatz 2004, and Weller 2000, 2001 for this. So many citations, here's the full ones below now.

McCook, A. (2006). Is Peer Review Broken? Scientist 20 (2): 26.

Meadows, A. J. (2001). Communicating Research. San Diego, CA: Academic Press.

Nature Peer Review Trial and Debate. (2006). Nature. <http://www.nature.com/nature/peerreview/index.html>

Shatz, D. (2004). Peer Review: A Critical Inquiry. Lanham, MD: Rowman and Littlefield.

Weller, A. C. (2000). Editorial peer review for electronic journals: Current issues and emerging models. Journal of American Society for Information Science and Technology 51 (14): 1328-1333.

Weller, A. C. (2001). Peer Review: Its Strengths and Weaknesses. Medford, NJ: Information Today.

“New technologies did not result in shifting the balance among stakeholders as radically or as rapidly as some had hoped, largely because social practices are much more enduring than are technologies (65.)

“In a print world, most relationships are bibliographic references to other documents or to data sources. In a digital world, these references can be automated links that will take the reader directly to the source document or even the cited passage within that document.” (70.)

“With active links, readers can follow a trail directly to sources and data, and may be more likely to verify claims” (70.)

Information technologies now enable anyone to be a publisher, in the generic sense that anything “made public” is published. Nevertheless, the supposedly low barriers to entry in computer-based publishing ignore the complex relationships between stakeholders. “Self-publishing” is an oxymoron in the scholarly world. Authors need peer-reviewers; publishers need authors, editors, and reviewers; and libraries need content to collect, organize, make accessible, and preserve. (76.)

Because academic publishing doesn't do the whole self-publishing thing, depending on others reviews before permitting publication, the lowering of technical barriers to publishing is insufficient on its own to make stakeholder voices be heard in academic conversations. The lowered technical barriers to entry mean that a social change of listening to stakeholders and inviting them into conversations are easier to do from a logistics standpoint. That's it.

Changes in online review led to asking “who is a peet?” “When considering the legitimization of digital documents online, the question becomes, “legitimate to whom?” (84.)

“Students, practitioners, scholars with minimal access to the published literature, and the general public usually are happy to read and cite any free version of a document they can find online” (84.)

Posting documents online was considered prior publication as far as journals were concerned for a while. As more and more authors took advantage of the interent to post working copies of papers on repositories and personal websites, the policy changed, and such posting and circulation became an informal communication which no longer prevented journal publication. [Like Melanie Yergeau's blog post that got expanded into an article on Disability Studies Quarterly!]

The ways that people actually read (or decide whether or not to read) scholarly publications aren't perfectly suited to print, with skimming of titles, abstracts, and conclusions more common than reading the entire article linearly. Similar jumping around sections is common for books as well. Electronic publications could take advantage of their increased flexibility, including the lack of requirement for linearity, and design for these actual habits. However, this doesn't usually happen. Online texts typically attempt to be just as linear as print texts.

Scholarly information never will be completely translatable between disciplines any more than languages ever will be perfectly translatable. Some ideas within fields cannot be fully expressed in the language of another field, just as some ideas in French or Chinese cannot be fully expressed in English. We can improve the transmission and translation of ideas through tools and practices, however. (230.)

I think that also ties in with the paradigm stuff that Nick Walker talks about in his essay where he describes the neurodiversity paradigm. Ideas from different paradigms don't really translate well to others, usually. Sometimes a piece of data can be picked up from one and re-interpreted in another, but it's a lot of work.

The lack of perfect translatability between academic fields is both a strength and a weakness of information infrastructure. It is a strength in that fields can express themselves in the full richness of their own languages. It is a weakness in that rich internal structures can create rigid boundaries between fields. Interdisciplinary work depends on the ability to span those boundaries. (231-232.)

Forfeiting the richness of local language is too high a price to pay for interoperability. (232.)

These two bits line up big time with the whole translation thing. Translators are important, both across disciplines and between activists and academics, and all kinds of cultural differences within and outside academia.

And now I go through the references section for stuff I'd read if time were infinite. I probably won't read most of it, though, because time isn't infinite.

Artandi, S. (1973). Information concepts and their utility. Journal for the American Society for Information Science 24 (4): 242-245.

Bailey, C. (2005). Open Access Bibliography: Liberating Scholarly Literature with e-Prints and Open Access Journals. Washington, D.C: Association of Research Libraries. <http://info.lib.uh.edu/cwb/oab.pdf> (URL is from 2006, might not still be working.)

Barnett, G. A., Fink, E.L., and Debus, M. B. (1989). A mathematical model of citation age. Communication Research 16 (4): 510-531.

Crane, D. (1972). Invisible Colleges: Diffusion of Knowledge in Scientific Communities. Chicago: University of Chicago Press.

Journal of Documentation- the article cited is way out of date now but the journal sounds cool.

Day, R. E. (2001). The Modern Invention of Information: Discourse, History, and Power. Carbondale: Southern Illinois University Press.

Dillon, A. (1994). Designing Usable Electronic Text. London: Taylor and Francis.

Duguid, P. (2005). “The art of knowing”: Social and tacit dimensions of knowledge and the limits of community of practice. Information Society 21 (2): 109-118.

Gieryn, T. F. (1999). Cultural Boundaries of Science: Credibility on the Line. Chicago: University of Chicago Press.

Hemlin, S. and Rasmussen, S. B. (2006). The shift in academic quality control. Science, Technology, and Human Values 31 (2): 173-198.

Hughes, T. P. Human-Built World: How to Think about Technology and Culture. Chicago: University of Chicago Press.

Kling, R. (2004). The Internet and Unrefereed Scholarly Publishing. In Annual Review of Information Scheice and Technology, ed. B. Cronin, 38: 591-631. Medford, NJ: Information Today.

Knorr-Cetina, K. (1999). Epistimic Cultures: How the Sciences Make Knowledge. Camrbridge, MA: Harvard University Press.

Latour, B. We Have Never Been Modern. Trans. C. Porter. Cambridge, MA: Harvard University Press.

Latour, B., and Woolgar, S. (1986). Laboratory Life: The Construction of Scientific Facts. 2^nd ed. Princeton, NJ: Princeton University Press.

Tenopir, C., and King, D. W. (2002). Reading behaviour and electronic journals. Learned Publishing 15: 259-265.

Tenopir, C., and King, D. W. (2004). Communication Patterns of Engineers. Hoboken, NJ: Wiley.

Stumbled On: The Engineering Handbook of Smart Technology for Aging, Disability, and Independence

It's a PDF version, and I found it here. Since I'm in engineering and in disability, this is the kind of thing I am always interested in when I find it. Though I am definitely worried/expecting that it will be super medical model or maybe scientific model because that's where engineering tends to hang out.

First things first: the whole book citation is:

Helal, Abdelsalam A., Mounir Mokhtari, and Bessam Abdulrazak, eds. The Engineering Handbook of Smart Technology for Aging, Disability, and Independence. Hoboken, NJ: Wiley, 2008. PDF.

The select tool lets me select text, rather than selecting the page as an image, which I think means it's screen-readable.

It is one of those books where the different chapters have different authors, so when actually using it the different chapters get cited differently under most style guides. Yay for how long the works cited is going to be when I use books like this?

Also, the pdf is 971 pages long. Not every page in that is part of any chapter, but that is a lot of pages. There is no way I am sitting down and reading the whole thing. So I'm going to start with the table of contents and the index to figure out what to read on a first pass through, after which I'll make said pass through and take notes on that. Other parts, I may go back and read when they seem relevant to a particular project I'm working on. It's happened.

The chapters I think I want to read in full are:

• International Policy Context of Technologies for Disabilities: An Analytic Framework. 49-60. Rene Jahiel.
• ISO 9999 Assistive Products for Persons with Disability: Classification and Terminology. 117-126. Ir. Theo Bougie.
• Part II: Users, Needs, and Assistive Technology. Chapters 7-12, p 127-236.
• The Communication Assistant (Alternative Communication). 297-316. Leanne L.West.
• Context Awareness. 585-606. Jadwiga Indulska and Karen Henricksen.
• Universal Design/Design for All: Practice and Method. 803-818. Edward Steinfeld.
• Usability in Designing Assistive Technologies. 855-866. Jean-Claude Sperandio and Marion Wolff.

That's a total of 12 chapters, which is still a lot, but considering that there are a total of 49 chapters it's a significant reduction.

Going through the index, I also want to spot-read pages:

2, 5-7, 11-24, 29, 31-35, 39-41, 46-47, 65-68, 72-74, 101-116, 121, 130, 257-259, 273, 282-286, 291-292, 322-334, 389-392, 397-399, 441, 572-574, 616, 793, 712, 770-772, 788-793, 823-824, 826-829, 846-848, 907-920.

Yeah, I've got a lot of reading to do now. But I'm hyperlexic and interested in the topic, so yay!

Response on Stem Cell Therapy

This is a response to a question I was asked. Here's the question.

Dear Alyssa, Greetings from India I found your blog while I was researching about special schools in China. I enjoyed reading your posts. I wanted to know your opinion on stem cell therapy for autistic individuals. What are your thoughts? Do you support it? Do you think its useful, not just in terms of autism but also for other neurological disorders. I would love to know your perspective. Love, Avantika

The short answer is that I don't support stem therapy "for autism"  (it makes no sense) but I do for people with conditions where stem cell therapy makes sense (some heart stuff, liver stuff, sometimes Crohns) who are also autistic.

There's a few different opinions that are all part of the long answer.

• There's my opinion on stem cell therapy in general.
• There's science side, is stem cell therapy even relevant to anything about autism?
• There's my opinion on biomedical treatment of any kind "for autism."
• There's my opinion on stem cell therapy for other reasons on people who happen to be autistic.

Anyways.

Stem Cell Therapy in General

My opinion on stem cell therapy in general is that it's still pretty experimental, but there are things it's been shown to work at least some with. It's used for some liver stuff, some heart stuff, some neurodegenerative stuff, osteoathritis, and Crohns. What all these things have in common, so far as I can tell, is that adding new cells that work like patients and doctors expect them to work helps with whatever the patient doesn't want their body doing. 

Some people have ethical issues with stem cell research and therapy for various reasons. As a sciency person, I know that most of those concerns don't even apply in quite a few stem cell areas (adult stem cell lines and umbilical lines have nothing to do with abortion, fetal lines coming from "spare" fertilized eggs after in vitro could become people if implanted but it's also not abortion, and I'm pro-choice anyways.) So I think stem cell research and resulting therapies are really cool, as long as they 1) are working towards a goal that the person being treated supports (not a parent, not a doctor, not a caretaker, the person being treated) and 2) there's scientific reason to believe that it can (help) accomplish the goal. The amount of evidence needed is less for treatments that the person being treated knows are experimental, like as part of a study, and more for stuff that we're saying is known to work. Which level of evidence a person being treated wants before they agree to it (and there has to be consent here) is up to the person.

Relevance to Autism

Going back to what the things being treated have in common, these are conditions where adding new, healthy cells can help with whatever the problem is. Autism does not fit the bill, even a little bit. Even if you hold with the idea that autism is somehow terrible and reducing "symptoms of autism" is the holy grail of treatment, the relevance of stem cell therapies to autism itself is doubtful. Some evidence suggests that we've got extra brain cells and connections in comparison to neurotypical expectations, among other things. 

This isn't a statement about stem cell therapy for autistic people who could benefit for other reasons, like if an autistic person also had Crohns or osteoathritis or any of the other stuff that's getting successfully treated with stem cell therapy, the question would be about relevance to that condition rather than autism.

But no, stem cell therapy is not relevant to autism.

Biomedical Stuff for Autism

Biomedical treatments "for autism" are generally pretty confused about what they're supposed to be treating, how it's supposed to work, and everything in between. Stem cells "for autism" don't look like an exception here. 

At best, such treatments are aimed at reducing discomfort that we have for other reasons (like the fact that autism and epilepsy can occur together, autism and autoimmune stuff can occur together, just by sheer probabilities, unless autism and condition X are not independent (having one affects the chance of having the other) they will occur together for about 1% of people with condition X.) Those treatments would actually help with the condition they're properly meant for, and make autistic people who have that other condition more comfortable. Often, our being in less distress is wrongly taken to mean that we are less autistic, and so people decide that this treatment now reduces "autism." For an autistic person who also has any of the stuff that stem cell therapies are actually good for? The relevant form of stem cell therapy could go here.

At worst, such treatments are actively abusive and have no reason to work. Bleach enemas, chelation, chemical castration, and a lot of other "biomedical" and "alt med" things people do "for autism" go here. If the autistic person in question doesn't have anything for which stem cell therapies are actually relevant, then stem cell therapy may well go here.

Regardless, treatments "for autism" are also rooted in the idea that autism is wrong or lesser, while neurotypicality (or being able to fake it) is ideal. That's directly opposed to the neurodiversity paradigm, so the idea of any treatment "for autism" is not high on my list of good things. 

Rather than trying to make Autistic people be "less autistic," I support giving us the treatment and tools that help us live better lives as Autistic people. If we've got any stuff going on that's causing us problems (I've got asthma, for example,) then treating those problems is just as good an idea for Autistic people as it is for those lacking autism. People tend to prefer feeling good to feeling sick, after all. The problem is when people conflate "feeling better from other stuff" with "less autistic." We're not actually less autistic, and less autistic isn't actually a good goal anyways.

I've talked a bit about what education that's based in teaching us to live well as autistic people could look like, but it's so unusual that finding anything like that is tough. That's also not particularly the point of this answer, but if you're interested, here are a few:

• But AAC Increases Speech!'
• Growing up into an Autistic adult
• Education and Services, by Autistic people, for Autistic people
• More than two options

Stem Cell Therapy (when the person is also Autistic)

I don't see how this is different from stem cell therapy when the person isn't autistic. If someone has a condition where stem cell therapy is actually relevant, them being autistic isn't a counter-indicator.

On Technology's Role

I  read "On Institutionalized and Autonomous Access Forms: Toward a Refusal of Pity Infrastructure." As is typical of that blog, I'm not sure how much I understood the actual points the author was trying to make, but it made me think anyways.

I think I get what's being said here, though:

We can start to build communities that do not create singular models of access, but turn access needs into a constant conversation between people. Access needs can become an everchanging process based on persona deliberation.

And at least some of this:

Access and asking about access needs is built into the social patterns of disabled people amongst disabled people. This proves that access need not exist as a reassertion of private technology manufacturers and government bureaucracy.

Here's the thing:  I'm an engineer. I like finding technological solutions to problems. I like when technology can make a job or a process or a life or anything else easier.

What I don't like is when a lack of technology is used as an excuse to discriminate against people, or when a lack of technology is used as the excuse for failing at access. I especially don't like when technology is kept out of the reach of the people who need it most because of profit motivations or discrimination in general.

Before elevators, someone could have made the excuse "we don't have a way to get you up to the second floor" to a disabled person, and it might have even been true. That wouldn't have made it OK. Finding a way to make whatever the person needed be somewhere they could get at it, finding another way to get them to the second floor (there's ramps to the second and third floors in the gym complex, wide enough, smooth enough, non-steep enough that yes, you could take a wheel chair up that.)

When people don't understand the communication of disabled people, or when people don't understand that our actions have a purpose (even if it's a purpose that wouldn't make sense to others,) there can be problems. It depends on the attitude: If they say "I don't understand what you want, but I can understand your no and try stuff till I get it right if you want," that seems reasonable. If they instead decide that because they don't understand, there isn't any communication happening, that's not OK. Finding a technological solution to "we're having trouble understanding each other's communication" is a reasonable thing to try. (Google Translate, much?) Using technology to try to prove that communication isn't happening or using the current lack of a technological solution as an excuse to ignore communication is not OK.

So: The way you look at a problem matters. If you're looking at a problem in a way that is equitable and not oppressive (hard to do!) there may still be questions and problems where a technological solution makes it easier. The lack of technological solution isn't an excuse to do things wrong, but trying to find said technological solution and make it readily available is still cool.

If you're looking at a situation from an oppressive angle, the technology-based solutions you come up with are probably still based in that oppression and that's not OK.

Also:  There not being technology answers to any given access issue (yet?) doesn't keep disabled communities from figuring out ways to do access. Technology that makes it easier for people to do what they've already been doing, that makes it easier for communities that care about access to make it happen as a community? I think that's still worth trying to create, yes. 

I say "if you" here, but this is something I need to remember just as much, if not more, than most of my readers: I'm the engineer. I'm the one who'll be looking at problems and finding technological solutions for them, so I'm the one who's going to have to remember to pay very close attention to my perspective on the problems, to make sure that I'm not basing solutions in the idea of a person being broken or wrong or lesser, or of a culture being broken or wrong or lesser. I'm the one who's going to have to pay attention to, well, who I'm paying attention to for things like problem statements and possible solutions.

What if autistic people guess other's mental states MORE?

I've been (slowly) reading Daniel D. Hutto's book, Folk Psychological Narratives: The Sociocultural Basis of Understanding Reasons. I say slowly because, well, it's slow. It's meant for people who are much more able to handle (and thrive on) philosophy jargon, as opposed to my sometimes ability to essentially liveblog it and hope that what I wrote out in what amounts to a liveblog in my own language sticks.

I'm only bothering at all because the ideas in the preface looked interesting, and I'm only able to at all because this one is better than most about using words I can understand and providing examples I can understand.

Right now, I want to talk about an idea that reading his stuff has let me work through a bit better. Here's some of the stuff from him that I'm looking at:

1. It makes sense to ask if we even seek to understand people using predictions and explanations anyways. “For one thing, it is not plausible that we could take a detached interest in the movements of all those we encounter, for to do so would surely sap our intellectual resources” (250.)
2. Hutto repeatedly points out that speculating on others reasons for their actions, even when we have evidence to support us, is unlikely to get us the right reasons, and that while the person's own explanation for why they acted isn't 100% foolproof, it's way more likely to be accurate than the guess is. I think I have this in my notes 3-4 times and I'm still on chapter 1 (and its endnotes.)
3. In some cases, a person's beliefs and desires could be sufficiently different from those expected that knowing what they were doesn't actually help make their actions understandable. It just moves the confusion from “Why did you do that?” to “Why would you think/want that?” In that case, further explanation, using cultural differences or individual differences, is needed to understand. (Paraphrase from a paragraph on pages 7-8.)
4. Stories can help us understand unusual actions: they can either show us why the reasoning behind an action is actually familiar or they can make it familiar. (Summary of a paragraph on page 8.)
5. “Sometimes the behavior of others is so erratic that we have no option but to regard those individuals in the same light as we do objects” (8.)

I think that covers the ideas and quotes I'm using for this bit.

Anyways.

Now for immediate responses I had to each of those things.

1. I've seen a lot of autistic people write that trying to understand what others are doing, trying to understand social situations, is exhausting. It's cognitively taxing! As an autistic person, I'm going to agree. Handling social situations does “sap [my] intellectual resources.”
2. And people insisting on taking that kind of spectator guessing without listening to the person's explanation when trying to explain the actions of neurodivergent people (my experience would be as an autistic person) is basically using this kind of logic. No wonder it doesn't go well! Folks, we already know it doesn't work that great when it's within the same culture and neurotype! (Grumble grumble theory of mind grumble grumble doesn't know what it's like to be themselves grumble grumble nonsense.)
3. Oh, you mean like people thinking big parties are fun? Or that strobe lights are fun? Or that fluorescent lights were a reasonable idea? Or one of any number of ways that sensory processing and general cognitive differences mean that people's wants could be different to the point of not being able to understand them.
4. Huh. So that's going to tie into representation stuff for all the groups ever. If there aren't stories about neurodivergent people acting for reasons that make sense to neurodivergent people, then it'll be harder for folks to understand the reasons neurodivergent people might have for doing things. Which goes back into thinking we're not understandable. I guess I'll keep writing fiction with autistic characters, especially protagonists, who don't die, get cured, or get sent away.
5. THIS IS NOT AN AUTISTIC PERSON SAYING THIS. THIS IS A PRESUMABLY NEUROTYPICAL ACADEMIC SAYING THAT WE SOMETIMES REGARD PEOPLE IN THE SAME LIGHT AS OBJECTS. Now that that's been established:
   1. The reason given that we would do so is when their actions are super-duper not understandable to us. Super-duper not understandable, not even a little bit sense-making.
      
      
   2. Isn't it people in privileged and majority groups who tend to have trouble seeing members of oppressed and minority groups as human? And the stories are about the people in the privileged and majority groups, so... yeah, actually this totally fits.

Now, I have some connections between the things!

Hear me out.

What if it's not that autistic people have some sort of inability to use folk psychology or theory of mind or any of those other things? What if it's that the reasons for doing things that make automatic or near automatic sense to autistic people are sufficiently different from the ones that make automatic or near automatic sense to neurotypical people that we have to resort to those kinds of guesses more? Then we run into the fact that no one is actually very good at those guesses.

And what if we resort to those guesses because the reasons that make sense to the dominant neurotypical culture are supposed to be “obvious” and we get laughed at (and probably still not answered) when we ask?

What if the idea that autistic people see others as objects... is because that's what most people do, at least a little bit, when their actions are super-duper impossible to understand, and the differences aren't being explained in ways that make sense to us? (I mean, also autistic people generally don't actually think of other people as objects.)

What if the exhaustion that autistic people often have trying to do social things is because, unlike people who are close enough to the mythical exactly average neurology that these expectations can be picked up by osmosis, we do have to use the kind of prediction and explanation that Hutto was arguing against on page 250, and he's right that the problem with doing that is exhaustion?

What if a willingness to explain the reasons and cultural underpinnings on the neurotypical side, and a willingness to listen to the neurominority-side explanations, could go further to solve the supposed lack of theory of mind or inability to use folk psychology (different things according to Hutto, and both things that I think aren't what's going on) than any amount of “therapy” to teach those skills ever could, because those skills weren't what was missing?

And by what if, I totally mean that I think those are what's going on. And I know other neurodivergent people have thought of a lot of these things before, but I think the specific way of looking at it through Hutto's ideas of folk psychology stuff and challenging how the neurotypical folk do things might be new. Also the turning theory of mind upside down and saying that  maybe we resort to that more, and that since it's not that reliable for anyone, that's part of where social differences are coming from. (Which would make the social differences a lot less "core" to autism than they're usually treated as.)

Work Cited

Hutto, Daniel D. Folk Psychological Narratives: The Sociocultural Basis of Understanding Reasons. Cambridge, MA: MIT, 2008. Print.

Science and the environment: 2 essays

So we do in-class essays every so often. These tend to be shorter than full weekly ones for Monday reports, but longer than the ones I write on daily homeworks or preparing for tutoring reports.

Here are two that I did in the unit on environmental stuff, they're both about science and environment stuff.


随着科技发展，越来越多人买电脑，手机等。这样，电子垃圾增多了。因为电子垃圾对环境污染造成了严重的后果，所以我们要解决电子垃圾得问题。

那么，我们会怎么解决呢？根据“从个人做起”的想法，个人会用可充电的电池，长一点时间用以各手机等。这样，个人扔掉的电子垃圾会减少。

但是，个人不会从根本上解决电子垃圾的问题。公司应该多开发可以回收的产品。而且，公司应该愿意修自己的产品，不让的人多扔掉。

不仅个人，公司要来解决电子垃圾的问题，而且国家政府要来解决电子垃圾的问题。因为个人难以让公司做应该做的事，所以国家要采用规则让公司开发可回收的产品。而且，国家要资助开发可回收产品的研究。

如果个人，公司，国家合作解决电子垃圾的问题，电子垃圾会减少，对环境又帮助。


And here's the other one.

有人认为科技发展越快，环境问题越严重。他们拿空调的发明，塑料袋的制作，车的使用等当他们的例子。反而，科技发展得越快，科技找解决环境问题的做法也越快。因此，我们不应该把环境问题归咎于科技的快速发展。

对环保来说，科技的快速发展是一柄双刃剑。人们滥用塑料袋对世界造成白污染。人们为了方便多开车又带来了不便（交通阻塞）又带来了环境问题。公司，为了挣钱，给世界巨大的污染问题。从企业革命开始，科技的快速发展及人类得经济选择一起带来了越来越严重的环境问题。

但是，科学也带来了一些解决环境问题的方式，即回收，太阳能，水能，风能。人们不使用这些方式来解决一些环境问题不是科学的问题，而是社会的问题。有一次，加拿大的一家公司提供完全没有排放的一辆车。没有人买这家公司的车。这不是科学得问题。我们不应该责备科学：环境问题是人类的问题。科技只当人类的工具。

Have some more essays!

Woo, have 4 more things I wrote for Chinese class.

This one is about environmental stuff and subway construction in Nanjing.

 

南京为了建新的地铁线会砍树及移树。从环境保护的角度来说，因为在南京移的树中，只有15棵存活，保存率只有18％。地铁建设部不仅不看重保护南京的桐，反而更好的地铁也对保护环境好。反过来说，发生之所以地铁建设部移这么多树，是因为设计问题：政府让他们少移树，地铁建设部就从1065棵减少到780棵减少到328棵。这样做表明地铁建设部不必这样做。通过政府“移树”的观点，因为政府有办法一边建地铁，一边保护桐，所以他们应该这样做。

 

This one is about global warming.

全球变暖是非常严重的一个问题。虽然有一些人说“谈气候变暖的科学家都是危言耸听，”但是气候变暖已经会殃及。（对于科学来说“气候变暖”绝非 完全对的名字，而是给气候变化的一部分表明。世界变暖只是冰山一角。除了变暖以外，也有龙卷风变多，暴风雪变多，海平升高等。） 无止境排放尾气会引发一系列连锁反应：温室气体让气氛有更多水汽。水汽是一种温室气体，就是一种周而复始。而且，冰帽反影太阳光。如果冰帽融化的话，冰帽反映的太阳光减少，由不得世界变得更暖。这个问题已经会过昂贵！但是，我们还有能力解决（或者帮助）世界变暖的问题。如果个人都少开车，政府提供环保的政策，公司来少排放尾气，这样做会有帮助。而且，多种树会让气氛里的二氧化碳减少。总的来说，快来做环保的事情对气候变暖问题有帮助。

 

Education by the family/at home between China and the USA.

中美家庭教育虽然表面上是截然不同的，而实际上中美父母做家庭教育为的是孩子的成功。中国父母注重成绩是因为在中国成功历来都是从教育来的（找好工作，这样的事情）。美国父母注重孩子快乐是因为我们认为快乐是一种成功。而且，中美两国的教育情况不一样。在美国申请大学比在中国申请大学容易多了。在美国，大学看成绩，考试，和课外活动。中国大学绝非放松，而是只看重一次残酷性的考试。 归根结底，问题在于教育情况，而不是中美父母完全不一样。中美父母都要希望孩子会有成功，区别是“成功”的结构和得到成功的方式。

 

Actually kind of the same as the last one lol.

中美两国的教育有一样的，也有很大的区别。在美国，孩子上小学的时候，父母不注重考试。（有一些学生，第一次考试是小学三年级。）而且，美国的小学生晚一点学好怎么静坐。 按说，中国学生从幼儿园要静坐。在课后的事情，中美两国也不太一样。条件充许的话，美国小孩儿尽是运动都参加。什么活动都做的不太好，但是什么都不惜参加是美国孩子的做法。中国孩子选少一点活动，直到做的非常好为止。中国教育注重做的非常好，美国教育注重学好很多事。

 

但是，中美两国都注重考试。中国历来都看重考试，美国今时越来越看重考试。因此，准备考试的补习班越来越大行其道。而且，美国教育注重考试的内容。在中国，注重考试的原因是从历史来的。而且，中国的高考过渡重要：每一年考一次，高考的成绩决定学生可以上什么大学。美国也有上大学的考试，但是没有中国的高考这么重要。在美国，考得不好但是高中成绩好的学生还可以上挺好的大学。在中国，这是不可能的。

Review: Democratizing Innovation

I read this book called Democratizing Innovation, by Eric von Hippel. Eric makes the pdf available for free on his website, so yes, this is a book I got for free. You can get it for free too. And I do suggest it for people who are interested in innovation, technology, engineering, and maybe even politics. Plus it's got a free translation into Chinese, so I can use the two together to learn better Chinese.
Reading it made me think about a lot of things: I think there are parallels between hacker culture (what most non-computer-nerds think of when they hear the word hacker is actually a cracker,) and anarchism, which is interesting. It's not the thing I know most about, since my experience with anarchsim basically extends to reacting to a couple Slingshot articles and I'm not actually an anarchist, but the book made me think of that parallel. That's why I think it could be interesting for someone who is into politics, especially anarchist politics.
It also made me think about possible parallels between user-innovators and scholar-activists, since both wind up creating things that they need and don't have. Scholar-activists come up with the words they need to describe things they run into in activism, sometimes. User-innovators come up with the inventions they need. It's similar. So an activist (especially a scholar-activist!) could find this book interesting.
I read a bit where manufacturers (incorrect) conventional wisdom caused them to not realize how many of their major innovations actually came from user-innovators, who are apparently invisible to them. It reminded me a bit of how it sometimes seems like big organizations don't notice the individuals who actually made things happen. (Hi Autism Speaks, I am looking at you right now.)
That's on top of the interest to people who are interested in innovation or engineering or technology, the topics this book is actually supposed to be about. It really is about those things, and it does a good job looking at what sorts of innovations come from which places and why. The effect of the internet is also looked at, including how people are using the internet to spread their own innovations and how Firefox is basically a pile of user innovations stuck together, same as most open source projects.
Besides this, there was examination of who makes these innovations. It seems to be the early adopters and people who are in similar but more advanced areas who make innovations, so the first people to get a car were innovators and the racecar drivers are innovators. It's actually really cool!
It even took the time for economic implications of widespread user innovation. Manufacturers would need to adjust, but overall social welfare can be increased with more user-innovators. 
Democratizing Innovation also has a good bibliography, from which I noted several pieces I am interested in reading. That's these:

Amabile, T. M. 1996. Creativity in Context. Westview.

Antelmon, Kristin. 2004. “Do Open Access Articles Have a Greater Research Impact?” College and Research Libraries 65, no 5: 372-382

Christensen, C. M. 1997. The Innovator's Dilemma. Harvard Business School Press.

Morris, A. D. and C. McClurg, eds. 1992. Frontiers in Social Movement Theory. Yale University Press.

Harhoff, D., J. Henkel, and E. von Hippel. 2003. Profiting from Voluntary Information Spillovers: How Users Benefit by Freely Revealing Their Innovations.” Research Policy. 35, no 10: 1753-1769.

Mishina, K. 1989. Essays on Technological Evolution. PhD Thesis, Harvard University.

Von Hippel, E. 1976. The Dominant Role of Users in the Scientific Instrument Innovation Process. Research Policy 5, no 3: 212-39

This is by no means the whole bibliography; it's just the items from it I think I want to read.

Experimental Design

I'm taking a psychology class online. We had to do an experimental design, I did mine at the last minute and this is it. 

The experiment I am designing is a variation of the conformity experiment testing to see if autistic adults are less likely, more likely, or approximately equally likely to conform their answers to match those of peers rather than trusting their own abilities. The independent variable is if the subject is on the autism spectrum or not (language note: There is not one agreed-upon term for autistic people, with preferences including person with autism, person with Aspergers, person with ASD, Aspie, Aspergian, Autie, A/autistic person, on the spectrum, and in some cases, Autistic as a noun. Autistic person will be used here.) The dependent variables will be likelihood of conforming to the incorrect answer 1) at least once over the course of the experiment and 2) on any given trial, with the groups divided into typical and autistic subjects.

The subject would be given a test alongside other "subjects," who are actually part of the experiment. The test would involve being given one line segment and a set of four line segments, one of which is the same length as the single segment. The subject would be asked to write their answer down prior to hearing the answers given by the fellow "subjects" so that it can be determined if the subject had the initial correct answer or not, after which the other subjects would begin to give their answer verbally. After this, the subject is asked to provide their answer, also verbally (this experiment excludes non-speaking autistic people due to this design constraint. A method allowing the person to type their answer in on an AAC device or choose a communication card to hand to the experimenter after hearing the other "subjects" answer may be usable, but it is uncertain and this will not be included in this experimental design.) Both initially written answers and verbal answers given to the room at large are recorded.

An initial incorrect answer with second answer correct and in alignment with the room, an initial incorrect answer with second answer differently incorrect in alignment with the room, and an initial correct answer with second answer incorrect in alignment with the room will all be recorded as conforming, unchanged answers where both are in alignment with the room (initially incorrect and second answer is the same incorrect answer in alignment in the room and correct answers for both when the other "subjects" give correct answers) and changed answers where both the initial and final answers are different from the room are neither conforming nor nonconforming, and any case not already covered where the final answer is different from that of the room is considered nonconforming.

This experiment would determine if autistic people are more, less, or equally likely to conform as typical peers, with it being necessary to match subjects so that gender and age do not affect the results. The experiment would not determine the reason for any differences which may (or may not) be found, only if there is such a difference.

This experiment design was inspired by the Asch conformity experiment and by the recent study "Children with autism do not overimitate" found in Current Biology and reported in Science Daily.

Autism in the Blood? Autism Parenting

Trigger Warning: Early Intervention, Possibilities of Eugenics
Leslie, the same person who wrote "How did I know my daughter was autistic?" and possibly "Wholeness and Completion" (unsure, but the daughter's name is the same and the writing has the same extra commas,) also wrote the final article of the December issue, "Autism in the blood?," discussing blood/genetic testing for autism.
For a blood test, the reasoning seems straightforward enough. If we can diagnose earlier, interventions start earlier. Considering what the current interventions tend to look like, that worries me. If the ways that we changed our educational methods for autistic children were ways that worked better for them, instead of making them more convenient for the teachers, parents, and caretakers, being aware that the kid is autistic sooner would be awesome. So this is a mixed bag for me. In an ideal world, this would be really cool. Just as a matter of curiosity, I'd love to know which blood tests currently can and can't tell that I'm autistic. But with the ways that autism is currently handled, I am not comfortable with giving them any information on my genetics that could help them figure this out. Get me a world where knowing you're autistic ASAP is definitively better, not for "acting normal" as most therapies prize, but for navigating a world not designed for you, and we'll talk. In a world where one of the things I am most grateful for is how long it took people to realize that I'm autistic? Not so much.
I still think that the "oh hey, more genes associated with autism means more evidence that autism is genetic" thing is cool, though. The more evidence we have behind genetics for how autism comes about, the better I can smash people who try to tell me that I'm vaccine-injured or something.
The other big worry I have, which wasn't addressed at all despite the fact that the study about it was mentioned, was the issue with prenatally predicting autism. Australian scientists really did develop a genetic autism test using 237 genetic markers that is 70% accurate for, well, white people. (Bayesian inference and an assumed 1% autism prevalence rate gives an actual 2.5% chance that a fetus that tests positive will be autistic. It takes 99% accuracy to make it a 50-50% chance that the kid who tests positive will actually be autistic given a 1% prevalence rate, for reference.) Since the Australian one was designed as a prenatal test, my worry, of course, is selective abortion. The idea of people aborting because the fetus is likely to have a brain wired like mine is terrifying, and it's not something the author is talking about. I envy her innocence, I think.
She's talking about tests and hoping to diagnose toddlers and getting them "closer in relation to their peers by the time they enter school." I'm reading that and wondering: "closer how?" If we're talking about getting whatever forms of communication we can up so that they have similar overall communication abilities (AAC is success here) then I am all in favor. If we're talking about looking normal, I am decidedly not in favor. I don't think we need to abandon all teaching for autistic kids, but I do think we need to be taking a look at what therapies we're using as a higher priority than getting potentially harmful ones to everyone. Take a look at the correlations between ABA and PTSD before we keep calling it the gold standard and getting everyone to cover it?
Increasing social and language skills is great. Make sure you know the cost of the teaching methods, and make sure it's social skills the way they are actually done, not compliance or the way you wish social skills worked. Compliance opens people up for a lifetime of abuse, the way you wish social skills worked isn't going to make them any more friends than the way they think it should work, maybe fewer. Their natural ones will at least work with other autistic people.

USA Today. Doing it WRONG.

Trigger Warning: Forced institutionalization

USA Today?

We need to have Words.

See, there is this article about how it's just so hard to institutionalize a mentally ill adult without their consent that you published today, that got Tweeted out (I replied. I think others should too.)

That's not even true. 

It's hard for people who don't know how to go about it, sure, but for people who do?

Well, Aspie Rhetor, can tell you all about that.

I say so because it happened to her.

You talked about it like protecting society and protecting the patients were somehow at odds with each other.

You implied advocates think it's too hard to institutionalize us against our wills.

Advocates for what?

Why were none of these advocates people who have mental illnesses?

Why were none of these advocates people who have been institutionalized, maybe unwillingly?

Why, once again, do we only hear about how people are afraid now, not about how they got there?

I can tell you of people who are afraid, get this, because the person they spent their time abusing has grown big enough to fight back, and this self-defense is the aggression that is then used to try to have them locked up to be abused more, to be abused again.

The fact that talking about the idea of people being "hospitalized against their will," also known as forced institutionalization, is something I need to trigger warn for? That should tell you something. It should tell you a lot. It should tell you that it's something that gives people PTSD. You know, one of those pesky mental illnesses that you're trying to fix with all this talk of hospitalizing people against their wills? Yeah. It gives people mental illnesses when you do that.

Before worrying about how hard or easy it is to stick someone in there against their will (and it needs to be harder, not easier,) let's worry about making sure that what happens doesn't hurt more than it helps, shall we?

And for pete's sake, STOP acting like immediate violent outbursts are linked to planned violence like the "recent heinous acts." They aren't, and that's just going to make stigma worse. You know, that thing where when it gets worse people won't choose to get the help that they know would help them because they're scared? Yeah. Counterproductive, much? 

The whole article get's filed under doing it WRONG.

Now for the slightly side-note-ish stuff:

Can we also mention the fact that the parents trying to do the institutionalization that got quoted were parents of minors, not parents of adults? Seriously. If you want to talk about adults, get quotes about adults. It's just good reporting.

Oh, and Liz?

Yeah, I remember you from #autismchat and after.

You still follow me on Twitter as I write this. I'll be disappointed, but not surprised, if you unfollowed me after this.

I sent you that direct message, several months ago.

No reply. 

Looks like we get to keep blogging at each other, doesn't it?

It's been better than six months since you said you wanted more time, that you were learning.

You haven't.

Remember "Nothing about us, without us"? It applies to all groups. You don't get to talk about mental illness without getting meaningful input from people who have them. Relatives don't count.

See "And That Was Not Someone Who Got The Point."

I wasn't really expecting anything different anymore, though, honestly.

Self-advocacy groups are used to empty promises, you know.