“Fun” isn’t always all that easy, either.

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One of my hobbies is collecting books by autistic people. At this point, I don’t even always read them, but I love to obtain them, put them on the shelf, and keep them in order.

Anyway, one of my aims for several years now has been to create a searchable index so that other autistic people (or other interested people) can pick out books more easily by any of a number of subjects. I thought of the idea because people were always asking me “How can I find a book by an autistic person that…” “…addresses this particular subject,” “…has this particular interest,” “…had this particular experience,” “…had this particular label,” or else actually lamenting the idea that books didn’t exist by autistic people on those subjects/interests/experiences/labels (when in fact the books did exist, the person had just never heard of them — it’s only a relative few autiebiographies and such that people tend to know about, out of over a hundred that actually exist).

The problem is, this is a project better suited to an entirely different set of skills than the one I have.

I have a lot of trouble reading books for immediate comprehension, which is the sort of reading you have to be doing in order to scan through a book and write down how each subject category you’re doing pertains to the book (or even one subject category). I’m far better skimming through it, having no clue what I just read, and later finding that when someone asks me “Can you find me a book by an autistic person who’s into Dr. Who?” and then remembering the spot on my bookshelf that that book goes, going and grabbing it, and finding that it’s a book by Will Hadcroft. Or someone asking me about people who discuss employment, and going, grabbing a whole pile of books, and writing the names down.

It’s much harder to get the systematic sort of index that I want to make. On the employment issue, for instance. I would want to make a list of books by a number of categories:

  • Employment status of the author
  • Jobs the author holds or has held
  • Books that instruct about employment
  • Books that give experiences of employment
  • Books that are primarily about employment
  • Etc.

First off, I see all sorts of areas where the categories are imperfect, and this drives me nuts. I am horrible at categorizing things because of this. Not, as some autism “experts” would have it, because I’m “incapable of seeing the big picture.” But rather because my version of the “seeing the big picture” does not involve cutting out the real information and substituting in an abstract thought for a whole variety of actual pieces of reality that may not, under closer examination, fit the abstract thought. (Which seems to me to be what autism “experts” always mean by “seeing the big picture”, which might be why so many autism “experts” are so clueless about autistic people.)

Second off, even if I establish categories and such, this requires going through the entirety of every single book searching for how this particular book fits into that category. This requires reading for immediate conscious comprehension, which is not my best form of reading, as I mentioned. It requires then, while struggling to get through the actual book (while the entire world seems to be turning into a headachy blur of little black squiggles) reaching over and writing things down whenever they become important. It requires not suddenly seeing something else in the book that I need to remember for a later category and trying to write that down in addition to or instead of the original category. And it requires doing this to over a hundred books, where each new book just adds to being overloaded.

I have tried this several ways. I’ve tried it as “Pick category, go through, write down information, go on to next book.” I’ve tried it as “Pick book, write down every conceivable important piece of information for every single category for that book.” I’ve tried combinations and variations on those two ideas. Invariably, I end up with books everywhere in sight and totally overloaded (to the point of starting to throw the books across the room or hiding under my blankets trying not to look at them). And this is supposed to be a hobby, something I do for fun. Good grief.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

23 responses »

  1. I like the sound of Will Hadcroft, I’m a huge Dr Who Fan myself :).
    Categorisations are never easy as there’s so many different ways it can be done. I tried categorising my Agatha Christie collection the other day. Couldn’t decide between chronlogical order or by detectives. And that was a relatively easy choice to make.
    One category possibly, if you wanted, in your collection, might be those who were diagnosed as children and those who were diagnosed as adults (or came to realise they were autistic as adults).

  2. There are only two kinds of books in the world, those that have pictures and those that don’t however there is always the third category for errant topologists and the mathematically challenged :)

    Notwithstanding the index of books that index themselves and the index of indexes that are empty and also reference themselves which is even wierder.

    I wonder whether the category of books by an autistic author can ever be true because at the end of the day what is autism?

  3. I was already planning something around age of diagnosis, although even that isn’t remotely straightforward. And yes, neither is the category of who’s autistic, but I’m currently going loosely by self-definition on that one.

  4. This is a very interesting post to me. I’m currently working on a degree in Library Science, and just took a class last semester in Cataloging. I’m also working part-time, doing cataloging for a new digital library.

    I understand your frustration. I feel something similar every day, and I’m not even dealing with the reading challenges you describe. Cataloging anything is a totally frustrating experience. It’s never complete. It’s never perfect. And, as you note, it often involves fitting concrete things, events, and stories into abstract categories that don’t quite describe them. It’s maddening.

    What I end up doing is a combination of your two methods, multiple times. I categorize an item by as many dimensions/categories as I can stand at any one time, and then go on to the next item. Then I come back to each item eventually and fix the cataloging a bit. This is the advantage of a database over a card catalog (much easier to change the “catalog record”).

    A suggestion (take it or leave it, whichever works!): decide on a manageable list of categories first. What sorts of questions do you get the most? What will the majority of individuals want to know? Go by that, at first. You can always, always add more categories as you see the need, and as you get more questions or think of them. When you have experiences like that Dr. Who question, maybe you can add to the catalog (either a new category overall, or a new subject for a particular item).

    I don’t know if any of that makes sense.

    For what it’s worth, even in well-run libraries, people rely on the knowledge that librarians have along with the information in the searchable catalog. That detailed first-hand knowledge (like your Dr. Who example) can be next to impossible to put into a catalog, unless your catalog is sprawling and completely unmanageable.

  5. Is this a project that you could use help with?

    I have a few books here. I think I haven’t read them all yet. But I’m good at skimming and pulling out specific bits of information from books I’ve already read. If you tell me what books you’d be wanting to do this with, I could tell you what I have, and what I’d be willing to acquire for this (I could probably buy 2 or 3 more books for this without any problem). As you came up with a new topic, you could ask me to go through my assigned books and I’d get back to you some time later with the relevant information from those books. (It could be that I could get the info from as many as 2 books a day, or it might take several days due to RL conflicts.)

    If that possible solution doesn’t appeal, that’s fine — I just thought I’d put the offer out there for you, if efforts on the part of someone better at dealing with information in that manner would be wanted. (But you’d be in charge, and even if you asked me to suggest information categories, I probably wouldn’t come up with them very well, and that’s the most crucial part of it.)

  6. The ultimate indexing (never mind Russell’s paradoxes for now) is to index by every word in the text as Google does.

    In the digital library age with more and more electronic editions and gutenberg scans this will become possible.

    Other than that arrange books by there size shape and colour, I often commit that cardinal sin of primarily identifying a book by it’s cover.

  7. Can we have a forum or thread about this on autistics.org forums, like we had talked about? I bet ppl could come up with a lot of categories. Or if you want a huge number of categories, then WP.

    I can’t really read books while I’m working (I mean my brain can’t relax enough to get into a book unless I have all summer off) so I can’t say I’ll help out with reading. But maybe with categories…

    Hey you should describe your GUI program that you wanted. Maybe some reader is a programmer and could help?

  8. Do you include fiction by relatives of autistics? I noticed that the speed of dark (no caps in original title) by elizabeth moon wasn’t on your list. She’s the mom of an autistic boy who was a teenager at the time she published her novel in Jan ’03. The speed of dark, if you haven’t already heard of it, is sort of like an updated “Flowers for Algernon” but centering on an autistic man who isn’t so sure he wants to be neurotypical. Most of the book is spent on the central character (and some other autistic people he knows) wrestling with the decision on whether it’s worth getting a cure or not. In the end, the character, even though he’s happy being autistic, ends up accepting the “cure” anyway. So I’m guessing you would probably find certain aspects of this book annoying. Though it does also explore some of the strengths of autism (though I’ve no clue what you’ll think of the accuracy of its explorations). And I vaguely recall from when I first read it a few years ago that it talks a little about how neurotypicals “stim” too, they just do it in more socially acceptable ways because they’re the ones who define what is and isn’t “socially acceptable.”

    The central character labeled as “high functioning”, by the way, so it buys into that supposed division between “high functioning” and “low functioning.”

    If you want to add this book to your collection, I’m done with my copy and could probably be persuaded to give it up (though I might want to read it one more time first).

  9. Not in that particular collection. I do have stuff like that, but so much of the published stuff on autism is dominated by relatives (usually but not always parents) and professionals, that that’s one of the reasons I started collecting stuff by autistic people. And I’ve read that book.

  10. I have:

    # Sean Barron
    1. There’s A Boy In Here: Emerging from the Bonds of Autism (1992) – with Judy Barron

    # Temple Grandin
    1. Emergence: Labeled Autistic (1986) – with Margaret M. Scariano
    2. Thinking in Pictures: and other reports from my life with autism (1995)

    # Luke Jackson
    2. Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence (2002)

    # Dawn Prince-Hughes
    5. Songs of the Gorilla Nation: My Journey Through Autism (2004)

    # Stephen Shore
    1. Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (2001)
    2. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum (2004) – editor
    * Ruth Elaine Joyner Hane
    * Roger N. Meyer
    * Phil Schwarz
    * Stephen M. Shore
    * Kassiane Sibley
    * Liane Holliday Willey

    # Liane Holliday Willey
    1. Pretending to be Normal: Living with Asperger’s Syndrome (1999)
    2. Asperger Syndrome in the Family: Redefining Normal (2001)

    # Donna Williams
    1. Nobody Nowhere: The Extraordinary Autobiography of an Autistic (1992) – part 1 of 4 autobiographies
    2. Somebody Somewhere: Breaking Free from the World of Autism (1993) – part 2 of 4 autobiographies

    I’m willing to go through any of these looking for whatever category of detail you’re interested in at any particular time.

    Additionally, I’m willing to buy up to 3 more books to my collection in the next month, if anyone would find that useful in furthering this idea; I’d like for someone else to recommend which 1 or 2 or 3 books to add. I’d want the recommended books to be in English; I’m not up to going through anything in German this decade. (I don’t have time to brush up on it for at least the next 3 years.) If it’s available on amazon.com, I ought to be able to get it. I’d prefer NOT to spend a lot of money, but it’s well within my resources to get one fairly expensive book, if it comes to that. (What I’d like to do and what I can do are not necessarily the same, and if it’s a matter of spending more to give back to a community I’m drawing resources from, I’m willing and able to do so.)

  11. I work at Info Island on library collections and exhibits in Second Life. While I noticed when I visited the ALF yesterday that you had up a small clipping of the Kanner papers, I think that the museum would benefit from having more of the Kanner and Asperger papers, as well as other documents (not necessarily historical) currently freely available/in the public domain, and a thorough bibliography of titles written by autistics (maybe just a link to the bibliography on autistics.org?). The collection could be directed at both casual visitors and autistics.

    Just a thought. I’ll be at the ALF meeting on Tuesday (as Alanna Hera).

  12. As a PhD student I use a free program called Jabref. After the odd 200 references (and growing) I could not do my work without it.
    It lets you put in keywords, links …and if you write a summary the search function will look there too. Hope that helps.

  13. Poproxy, i think that expansion of the library (you will find more library upstairs in the museum, I think near the art exhibits or the Einstein Auditorium) is something we were working on but maybe got sidetracked to other things. Can you help? Please talk to Muskie at the meeting.

  14. From how you have described this before, it seems like you could take advantage of this delayed processing ability. Since this is a hobby project, there’s no hurry to get it finished. And so if comprehension takes time to develop, it does not matter.

    You might want to try just looking through some the books with the intention that, at a later time, you will be able to finish the project once you’ve had time to digest the material.

    I wonder if you even need to read each page word by word. Just scanning each page and focusing on the page for a few seconds so the words are clear and focused, may be enough to imprint it in your mind.

    Perhaps just looking through the books one at a time without trying to comprehend the material will allow the categorization process to work itself out in the back of your mind, and without you having to consciously do the categorizing.

  15. For Diana Carr at coomment #19

    Amanda is currently laying low so she can recuperate from the post-CNN publicity, which means she isn’t replying much to people right now.

    If you’re simply looking for more information on autism from the perspective of autistic adults, though, then you might want to go to:

    http://ballastexistenz.autistics.org/?p=317 and then scroll down to comments #56, #92, #102, #105, #133, #134, #138, and #147 to see some links to pages that might be useful to you. These include some links to blogs written by other autistic adults. Amanda is not the only intelligent, articulate, insightful autistic adult out there — she’s merely the most visible right now because of the CNN special. So if you’re simply looking to talk with autistic adults for their perspective, then there are tons of resources out there for you.

    Amanda also has a lot of links to other people’s pages. Go to the main page of her blog (http://ballastexistenz.autistics.org/?p=317) and look at the left and right hand columns.

    I’m not sure what you mean by “how to get on the bogg?”. If you mean blog, this is it, right here, you’re already at Amanda’s blog.

  16. I think you could skim through all the books just the way you like to read them.
    Then you get your list of categories and have somebody ask you questions like you listed in your posts, e.g., “which authors are employed?”
    If the question is stated properly, it should make you go to the bookshelf and pick up a pile of books by employed authors. Then all you do is make a list of them, or have somebody do it for you. Then make a list of unemployed authors, which would be everybody who’s left on the shelf.
    Then put all the books back on the shelf, pick next question and repeat.
    Would it work?

  17. This post is proof that even fun activities can cause overload from fixation on small details, or from necessary contemplation going haywire because all the options float around in the brain, colliding with one another. It’s like an expanding gas in a very tight space…….that eventually results in KABOOM unless the space is made bigger…….hence the warnings on aerosol cans (do not puncture or incinerate……that would make the gas expand/molecules move so fast as to blow the thing up trying to get out)…..ahh, chemistry…….

  18. Here are some categories I thought of:
    age of diagnosis – could be recorded as specific as possible then you could search for all in a certain range?
    whether they were really identified as autistic at diagnosis or later – eg Donna Williams I think was diagnosed very young but grew up basically undiagnosed for all practical purposes. A non-autism example would be My Thirteenth Winter, the author of that book was identified as gifted/LD in her early school years but they didn’t understand how she could be both, so the diagnosis was ignored.
    Whether the book is an autobiography, a non-autism related book, an anthology or an autism-related informational book (such as the one about social skills that Sean Barron and Temple Grandin co-wrote)?
    Whether they had any pets and what kinds, you could search by general category (eg mammals) or by specific species. You could also maybe have something about how long they had the pet, at what age and what happened to the pet (eg if they died of old age, died of some calamity, were given away, went missing, etc)?
    OK, I see what you mean. This is making my brain hurt.

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