Monthly Archives: January 2008

I was full of crap, but I’m not now. I hope.

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I just got home from the hospital. I had impacted bowels, completely obstructed bladder, as well as mild liver problems and dehydration. I was there for about five days while they catheterized me and gave me more laxatives and enemas than I care to think about (and paid more attention to my shit than anyone’s paid since I had a similar problem 10 years ago).

I’m better now, but I am exhausted, and somewhat nauseated. If I haven’t gotten to your emails, requests, comments, whatever, that’s why. Don’t expect a lot right now.

From Amanda’s friend– Amanda is in the hospital

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This is Laura Tisoncik, also known as “muskie” online.

Amanda is in the hospital and has been there since this weekend. It’s nothing terribly serious (I’ll let her explain when she’s out), and she’s getting better by the day. She should be back home, and with plenty more fuel for blog posts, in a few days.

Backwardsness

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I remember this happening with several people I spoke to about the machine I tried at MIT: When I explained that it showed physiological stress whenever I moved (that is not remotely present in other people), they said something to the effect of, “Oh, so stress causes movement difficulties, and if you weren’t stressed out you wouldn’t have as much trouble.”

Well, yes, stress can add to movement difficulties. That’s discussed in an interesting way in Interactions of Task Demands, Performance, and Neurology. But I doubt that’s what the machine was measuring.

Imagine, for a moment, that you are running a great distance. By the time you get to the finish, you find yourself sweating and gasping for air.

Imagine further, that someone notices this. They then say, “Oh, you could move much greater distances, I bet, if we found something to suppress your sweating and panting.”

This would sound ridiculous, and be very dangerous for your body. Not being able to sweat is serious: I had that problem on some medications, and it greatly reduced my tolerance for heat (lower than it was already) and exercise. Panting is an attempt to get more air into your body more quickly, and trying to run on less air would not be useful.

But nonetheless, we have situations where they say “Your brain functions certain ways when you are depressed. Therefore these brain functions cause depression!” We don’t even know whether it’s the chicken or the egg, but they think they have the answer.

For another example, I saw an autism “expert” at a time in my life when I alternated between superficially good speech and either inability to speak or really bad speech, usually several times a day by that point. She told me that if she reduced anxiety, then I would not need to use a keyboard. While she picked up the fact that I was really stressed out around speaking, she didn’t pick up the fact that it was the act of speech that stressed me out, and that had stressed me out for my entire life, because of how difficult it was. She didn’t realize that a lot of the stress she saw was an attempt to use sheer momentum to keep speech going (or that this was a reason I talked so much when I did talk — if I stopped, I wasn’t always able to start easily again). Nor did she realize that a keyboard reduced my stress levels immensely in its own right. She just saw two things she thought were associated with each other, defined the causality on her own, and insisted she knew what to do about it and what the results would be.

Reducing stress is usually a good thing in its own right. (I say “usually” because sometimes, stress is a motivator that is indispensable to some people when doing certain things: there are times when if I don’t get enough adrenaline going into doing something, I’m not going to be able to do it. But I have to pay a price for that and so do most people, I have just paid a more obvious price than most, because losing speech is a tad more conspicuous than losing the ability to run really far for awhile.) But my strong suspicion is that this measured stress, for me, is a consequence of the effort of trying to move, not the cause of the difficulty moving.

I wonder why people so often get causality backwards on these things, and then seek to alleviate the result of a problem rather than the cause of it.

Martin Luther King day

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I was just talking to a friend of mine, with the television “celebration” of Martin Luther King day in the background. And we were talking about how false that celebration is in many ways. That people are often not celebrating the real person, but almost a Disney version of who he was, what he accomplished, and what life was like at the time he was around.

My friend grew up in Chicago. She became inspired towards political activism when Dr. King marched through her neighborhood. But she also remembers that, in her white neighborhood, people were openly talking about going out and bashing him with baseball bats. He was hated, and people wanted him dead. She said that even if you were a white person who just supported him or the movement he was a part of, you were a target for harassment, assault, and possibly murder as well. People openly and frequently used some of the vilest terms for black people possible when referring to him and his supporters.

She said the television portrayals make it look like most ordinary people loved him at the time he was making these speeches. If that had been true to the extent it’s portrayed at times, he wouldn’t have had so urgently to make those speeches and lead those protests. Many of the people who today celebrate their particular whitewashed (the double meaning there is intentional) idea of him, at the time would have been completely against him, possibly even among the ones advocating violence towards him, and that is rarely acknowledged.

Generally if a person makes big changes in the world, and people think they’re wonderful a long time after they’re dead, there’s a good chance that the same people wouldn’t have found them so wonderful when they were alive. Fighting racism means, among other things, getting white people to change. And most white people, find it all well and good to speak out against some kind of injustice if they think it’s not close to them and they won’t have to do anything about it. Dr. King forced change, and white people were not happy about the idea they had to change anything. He is far more palatable to the same exact sorts of people, after his death and when they can claim (inaccurately) that the fight they are fighting is all done and they don’t have to change anymore.

And that’s another thing rarely acknowledged — that the fight isn’t even close to over. Things have come a long way in some areas, but racism is alive and well in America. The television often makes it look like there was this awful thing going on and Dr. King came along and made inspiring speeches and fixed it. That’s the myth taught to children, but it isn’t the reality. Dr. King would probably be horrified by many aspects of racism and poverty in America if he saw them today. At the time he died, he was becoming more and more outspoken about these things. Many of the problems he noticed are still with us, and many of the problems he predicted came true.

I’ve seen or heard these television specials in the background my entire life, and I’ve always been vaguely unsettled by something about them. I’m glad my friend had enough political knowledge to articulate why: Because they’re not about the real events, but a warped version that is more palatable to certain powerful segments of American society. The real events were much more important, and involving much more serious conflict from far more people, than is usually let on in TV specials. For many white people, saying racism is bad, is just fine with them, until they have to change something they’re doing. That is as true then as it is now, but we’re led to believe that the problems are all over, or mostly over, when unfortunately we’ve barely begun in many areas.

So I’d like to celebrate Dr. Martin Luther King as a real person, who helped accomplish real things, and who would obviously not be remotely satisfied with the way things remain even after the accomplishments of the movement he was part of. And I’d like to celebrate him whether it happens to be the one particular day of the year dedicated to him or not. I’d also like to see white people stop talking about racism in the past tense, as if it was something fought and conquered sometime in the past that nobody has to worry about anymore, or as if it’s something white people don’t have to worry about anymore. It’s still going on in a big way, and white people are pretty close to the only people who have the luxury of not noticing it or pretending it doesn’t exist.

No, I don’t do this, but I can point you at people who do.

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I think a lot of people come here looking for information about autism, or about “how autism affects me”. Because that’s how I’ve been presented to the world a number of times, and it’s also what’s generally expected as autistic people’s role in life. Some of the people who come here looking for that seem to get very angry about the fact that I’m not exactly as advertised (by others). Others seem to have been happy about it. But anyway.

While I do talk about some of that stuff, it’s not really my main focus here. But there are a lot of autistic people where it is their main focus. And I collect books by autistic people. I’ve been meaning to make a searchable index of them for years, and it just hasn’t happened. My skills don’t seem to run in that direction.

But people have always asked me “Is there a book on this sort of thing?” or “Is there a book by this sort of autistic person?” and so forth. And I’ve usually been able to come up with a book, or a whole list of books.

So I’ve come up with a page for it. That page is called I can help you look for books by autistic people. If you want to ask about it, please go to that page ( http://ballastexistenz.autistics.org/?page_id=483 ), please do not post your comment on the post I’m writing right now. Please be as specific as possible about what you want, so that it is easier for me to look for it. If I do not mention something in my answer, other people can feel free to chime in with other books that fit the question. There are books I can’t afford yet, so that will probably be inevitable.

Looking for books by autistic people?

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While I sometimes talk about various things that could be construed from the outside as “how autism affects me”, it’s truly not the main focus of this blog. I think a lot of people have seen me in the media and assumed that’s my main purpose. It’s not. It’s just one of the functions that disabled people, and even more so autistic people, are frequently portrayed as having in the world. I do a little of it, but not as much as many people want.

However, there are a number of other autistic people who have been quite willing to make that sort of information the main focus of their writing.

And I’ve always had a thing for collecting things.

One thing I collect is books by autistic people.

Originally I did this out of loneliness. I was completely isolated where I lived, and I wanted to know other people who had similar experiences to mine. I also found that I could get to know people who had different experiences to mine that way too. Not fully get to know, since as I’ve noted many times, you can’t completely get to know a person from their public writing. But get to know enough to ease the sensation that I was the only one like me in certain respects.

I started getting a lot of questions over the years about how to find books by autistic people on specific topics. I would answer them to the best of my ability, but I started to think this process should be automated. I eventually wanted to create an online place where people would be able to search on a number of characteristics. These characteristics can include characteristics of the author, audience of the book, subjects the book covers, focus of the book, and so forth.

The problem is, giving information to me about the book and then having me search for books with that characteristic is easy. Going through books and writing down al their characteristics is very difficult. I am rather stereotypical for a hyperlexic person, in that my immediate reading comprehension is not that good. I can’t just slow down and look for topics, because I don’t really understand books when I first read them. The understanding that leads me to be relatively good at being a human card catalog comes slowly and does not happen consciously.

So basically, I’d like to leave this page out here for people to make requests to find various books. Keep in mind that due to financial constraints I don’t have every single one of the latest books, this collection business is a slow one. Also keep in mind that while I have a lot of books by autistic people, I only have a few books by non-autistic people in my collection. Maybe I will start a list of books I do have just so you will know (I have a much larger list, but I want to make a smaller list of just these books).

Keep in mind, also, that if a book only has one or two chapters by autistic people, I might not know as much about it, but you could try.

So, feel free to ask for books by autistic people on any topic. I will do my best to find them. Be aware that unless you ask for personal recommendations from me, I will show you books I don’t like as much as I show you books I do. You can ask about characteristics of the author, books by a particular author in general, dates of publication, topics the book covers, even the color of the cover (in whatever edition I have), and any number of things, and I’ll try to find them. You can also describe a book that you read at some point, and I’ll try to tell you which ones it might be. Consider me a long-distance librarian at a place where you’d have to buy the books yourself, or something.

Comments from when this was a page not a post:

Note: There were too many comments for me to edit all the broken links out of them. So please don’t try to follow links in these comments (including the “Reply” links) because they won’t help you.

  1. Could you please recommend autobiographies written by hyperlexic individuals.

  2. Marla says:

    I would like to find a book about making it through the teenage years, puberty issues, advice for self care for girls in particular. I have a “tween” and some issues are developing in these areas. I have never found a book written by an autistic person on this topic so I will be interested if you find anything. Thank you for your help.

  3. Okay, first some hyperlexia stuff.

    Born on the Wrong Planet by Erika Hammerschmidt is an autobiography by someone who appears to be hyperlexic. (I don’t know if she mentioned it by name or not.)

    Asperger Syndrome, the Universe and Everything is by Kenneth Hall, who describes himself as having figured out how to read on his own very young, much before school.

    Pretending to be Normal: Living with Asperger’s syndrome by Liane Holliday Willey appears to be by someone hyperlexic. (She doesn’t use that word, but she describes being able to read at the age of three when she was given an IQ test.)

    Confusion, Loneliness, Depression: Asperger’s Syndrome – A Journey is by John Brine, who is hyperlexic, and Patricia Brine, his mother

    Wasted Talent: musings of an autistic by Krishna Narayanan might be by a hyperlexic author. He writes of being able to read written words long before anyone knew he could, but it doesn’t say how early.

    Born on a Blue Day: Inside the extraordinary mind of an autistic savant by Daniel Tammet is an autobiography by someone who, while he doesn’t mention reading early, has a strong attachment to letters, numbers, and language that is common in hyperlexic people. (He is also a conceptual synaesthete.)

    Aquamarine Blue 5: Personal Stories of college students with autism edited by Dawn Prince-Hughes is an anthology, not an autobiography specifically, but at least one of the contributors seems to be hyperlexic.

    Voices from the Spectrum: parents, grandparents, siblings, people with autism, and professionals share their wisdom edited by Cindy Ariel and Robert Naseef, is an anthology, mostly not by autistic people, but does appear to contain at least one hyperlexic author in there.

    I also think Women from Another Planet (edited by Jean Kearns Miller) and Sharing Our Wisdom (edited by Gillingham and McClennan), both anthologies, probably both contain things by hyperlexic people.

    None of the anthologies mentioned are autobiographies, I just thought I’d mention them.

    The autobiographies are not specifically about hyperlexia, the authors just happen to be hyperlexic. In addition to this, there are a number of authors who fit a standard definition of hyperlexia as decoding words without meaning, but did not read early. (In fact, a number were dyslexic.) I wasn’t sure if you wanted those, so didn’t include them. Donna Williams, who has written a lot of books, is a good example (and the one who jumps most clearly to mind) of someone who could not puzzle out any form of words for a long time, but around the age of nine became able to read words out loud with no meaning.

    It’s also worth noting, though, that a lot of hyperlexic people are stereotyped as reading without meaning, but actually obtain a lot of meaning from what they read. (I do actually get meaning from what I read, but I get it so slowly in many cases that for a lot of purposes I do appear to fit the stereotype.)

    There may be other authors who are hyperlexic but either didn’t mention it in their books, or I haven’t got round to reading the books yet, or I didn’t notice when they did mention it. A lot of authors just plain don’t mention reading at all, and some of them somehow seem like they might be hyperlexic, but it’s hard to tell. Dinah Murray may be hyperlexic, I just plain don’t remember. It’s probably possible to look her up and ask her. She wrote a short biography of herself in Coming Out Asperger, an anthology she also edited. She is not sure whether she counts as autistic or not. I am not sure if she is hyperlexic or not. I keep thinking though that somehow her use of words like “insouciantly” (!?!) and “monotropic” and other things that seem even less capable of ever entering my vocabulary than usual, might mean something. But you’d have to check with her. Here is her website (which I also find mostly-incomprehensible in terms of vocabulary, no insult to her). It might have contact information.

  4. Okay… as far as puberty and girls goes, I know that there are a lot of books I don’t have because my first priority is collecting books by autistic people in general. I know there’s more than this.

    Any autobiography by an autistic woman that happens to cover adolescence (which is most) would have personal stories of adolescence in it. I’ve seen those cover anything from a few paragraphs to the entire book, depending on the focus.

    Asperger syndrome in adolescencee was edited by Liane Holliday Willey. It has writing by a number of authors, both autistic and not.

    The People in a Girl’s Life: How to Find Them, Better Understand Them and Keep Them by Martha Kate Downey and Kate Noelle Downey is a series of letters back and forth between a mother and her daughter.

    Women from Another Planet? Our Lives in the universe of autism edited by Jean Kearns Miller, is by a number of autistic women all at once, and some of it covers adolescence (I mentioned it because it has several women’s writing all in the same place).

    Sex, Sexuality, and the Autism Spectrum is a book by Wendy Lawson mostly about sexuality rather than other aspects of puberty.

    Autism-Asperger’s and Sexuality: Puberty and beyond is a book by Jerry and Mary Newport that, like Wendy Lawson’s, deals mostly with puberty.

    I’m also remembering Mozart and the Whale, which is Jerry and Mary Newport’s joint autobiographies, intertwined with each other (they’re a married couple who are both autistic). Mary Newport describes puberty in that one in a way that is way familiar to me and not in all the other books, so if the girl in question is having more and more trouble during puberty, go for that one.

    I’ve heard Tony Attwood has a new book out on Asperger’s and girls. I don’t know if it covers puberty, and I don’t know how good it is. I want to get it, but I keep getting books by autistic people instead. (Although Temple Grandin’s an author of that, so it’s on my list, somewhere.)

    I do know that Tony Attwood’s book The Complete Guide to Asperger’s Syndrome does in fact go into a fair bit of detail as to what can happen in puberty, and said some really important stuff about things that can happen to girls in puberty than can have disastrous consequences if misunderstood. (Apparently autistic kids entering puberty, and especially girls, frequently come up with imaginary worlds, a lot like I did. And then get diagnosed as psychotic because we act them out as if we believe them, or, as may be closer to the case, desperately want to believe them.)

  5. Luai_lashire says:

    Do you have any books that talk about autism and eating disorders? Preferably not about anorexia or bulimia, but about having difficulty eating when stressed, or forgetting to eat, or how to get a person with food sensitivity to expand her diet. These are all problems I have.

  6. Ettina says:

    “I’ve heard Tony Attwood has a new book out on Asperger’s and girls. I don’t know if it covers puberty, and I don’t know how good it is. I want to get it, but I keep getting books by autistic people instead. (Although Temple Grandin’s an author of that, so it’s on my list, somewhere.)”

    I think I’ve got it. It’s called (unsurprinsingly) Asperger’s and Girls. There’s a bunch of contributors, buit I think Tony Atwood wrote something in it (can’t remember if as a contributor or an editor).
    The quality varies by which part of it you’re discussing. I believe Tony Attwood discussed why AS girls are underdiagnosed and how there’s not enough stuff for them – eg most of the ‘social skills’ classes are boy-focused and have mostly boys in them and girls have different social norms. It seems fairly good, like ‘knowledgable non-autistic who doesn’t know much about disability rights but isn’t particularly anti-autistic’ sort of thing. There’s also a bit about advice for a teenage AS girl about social skills which I hated because it’s like ‘this is how this must be done’ instead of ‘these are the norms and you may want to know about them’ (in other words it assumed autistic girls should want to act as NT as possible) but it has some information which may be useful. There was also a brief autobiography thing by an autistic woman who ended up having a child as a teenager without even knowing the basics of reproduction (for example, she had no idea sex had any connection with pregnancy). I also remember she had a distinctive way of describing things which always induces a certain ‘floaty’ feeling in me when I read it, and seems more common in autistic writers than others (Pretending to be Normal is another example of the same style that I recently read – that neurodiversity book by that bipolar friend of Dawn Prince-Hughes that Amanda Baggs reviwed ages ago is another example). I think there were others in the book that I’ve forgotten, probably mainly in similar mental categories to Tony Attwood and the one talking about social skills. There may also be another autistic woman who told her story in the same style of writing and I’ve melded the two together.
    On another topic, sometime between 5-9 years old I developed an obsessive interest in the Animorphs series to the point where I insisted that Yeerks (the evil aliens who take over people’s minds in that series) were real, and all the rest of the stuff in that story. Really, I knew it wasn’t real, but I desperately *wanted* to believe it and probably my teachers thought I did believe it (which might explain why they tried to destroy my interest in it – thereby intensifying my obsession). A bit earlier than Tony Attwood describes, but a very similar thing.

  7. Ettina says:

    Aquamarine Blue 5 (I think) has a story about an autistic woman who has trouble eating of that kind.
    Also, there’s a Yahoo group AutisticDailyLiving which discusses these kinds of issues.

  8. The autobiographies are not specifically about hyperlexia, the authors just happen to be hyperlexic. In addition to this, there are a number of authors who fit a standard definition of hyperlexia as decoding words without meaning, but did not read early.

    Huh, so that’s the standard definition of it. I’ve seen several definitions. I’m not sure if we fit that one exactly, but we have something like it; when we were evaluated as having an “adult reading level” at the age of eight, what that really meant (in practice) was that we could read large chunks of text very quickly and pronounce and spell all of the words in them, and even define most of them out of context, but had little or no comprehension of a lot of what we read, even though we could define many of the individual words on their own.

    Even in high school we were having that problem– we’d read some of the things we were assigned but not be able to tell you much, if anything, about what we’d just read. (Of course, at a typical high school, that actually puts you in good company with a lot of the “normal” students, but at least we were actually trying.) Things like Cliffs Notes and summaries actually didn’t help because there was no guarantee that we’d get any more meaning from the summaries.

    We finally figured out how to read every individual word with meaning in a written piece when we were 18, but it took us a long time and we’d often end up feeling exhausted. We also had some kind of OCD/synaesthetic/perseveratory thing (I think it was a combination of several factors) where we’d sort of get lost in or stuck on certain words and phrases or their shapes or meanings and not be able to move on. So we might end up taking several weeks to a month to read a single book.

    On the other hand, we’ve also known some people whose definition of “hyperlexia” meant that they actually understood everything they read as a kid.

    Actually, now we’re curious if there are any books by autistic authors that talk about something more like this phenomenon.

  9. Huh, so that’s the standard definition of it.

    Well, that’s part of the standard definition. Other parts tend to include reading early and stuff.

    I hate to wikiquote here, but it’s the easiest way to find the standard definition:

    In hyperlexia, a child spontaneously and precociously masters single-word reading. It can be viewed as a superability, that is, word recognition ability far above expected levels. The more common definition also includes difficulties with comprehension of printed material beyond or even at the single-word level. Many hyperlexics also have trouble understanding speech.

    I fit the whole definition, but I really fit the bolded part to a T.

    I noticed the other day, how much of my day I go through without even having a clue what anyone is saying.

    I just go through a routine, hear their voice as this noise that goes up and down, and respond to whatever their body and tone communicate as part of a pattern rather than with any comprehension of the words.

    I think they could be speaking another language, and if it sounded enough like English tonally I’d never notice. It takes me a long time to tell the difference between German and English on the radio, for instance. They’re just too similar. I used to have a roommate from Germany and when she talked on the phone to her mother I often couldn’t tell what language she was speaking either.

    And my decoding ability (although often somewhat painful to use) seems to translate to some kind of similar ability with spoken English, where I can sort of throw the right patterns of words around relatively easily, but using them for communication of what’s in my head is more difficult.

    I’ve noticed that if I don’t watch what I’m typing, I type entire sentences that have nothing to do with what I’m thinking, it’s just an autopilot. It’s just that I do it less in typing than in speech.

    And I suspect all of these things have to do with growing up with a giant disconnect when it came to language comprehension.

    At any rate, Donna Williams has gone into more depth on the experience of this than any other author I know of.

    Also, one of the reasons that the way it really was for me, is seen as just a stereotype by some, is that some autistic people (such as my friend Laura) have been told they didn’t understand the words they read, but it was just because they used no inflection when reading them.

    To wikiquote some more, there’s another sentence that says:

    They are extremely good at decoding language and thus often become very early readers.

    I can’t tell if that “often” is the sort of often some people throw in just to hedge (or out of habit), or whether it’s an “often” as in “it doesn’t mean you have to be an early reader”.

    I’ve found many similarities in my life to dyslexic people, and found that my version of hyperlexia feels like a version of dyslexia only without any trouble decoding words (and while some people claim decoding words is the only problem dyslexic people have with language, it really isn’t, at least not always). Donna Williams describes herself as dyslexic, but once she begins decoding words she sounds exactly like anyone hyperlexic (by the standard definition I quote above, and minus the “precocious” part, maybe).

  10. And… good grief… I ought not to do this thing where I only pick out the parts I need to comprehend to exercise the comprehension energy on.

    I actually almost exactly fit exactly the profile of a hyperlexic person given on Wikipedia, which I’d summarize as:

    * Early decoding of written words
    * Trouble with comprehension of both written and spoken words
    * Autism
    * Fascination with letters and numbers
    * Learn spelling of long words early
    * Learn reading of sentences early
    * Assumed to just be highly gifted because of all the early reading (despite the disconnects in comprehension and expression)
    * Learning to speak only by rote and heavy repetition
    * Developing language only through extensive echolalia
    * Lacking in spontaneous language
    * Delay in pragmatic speech
    * Jump forward in language around the age of 4 or 5 (note: this is as common in autistic children as it’s common for “typical” children to have a jump forward a little while earlier than that)
    * (Apparent) lack of desire to be around other children
    * Lag in social skills

    The only part that I don’t remember in particular is a fascination with letters and numbers, I remember being fascinated with a lot of things but I don’t remember that. (I’m sure my mother can correct me if she reads this.) And I had a jump forward in something at 4 or 5, but it was more like I was a little more connected to my body, more than anything, I don’t think it was language so much (I had a similar jump at the age of 7, again having something to do with my body, and resulting in an increase of pain and a huge increase in tics and OCD).

    I know my mom also said that my brother (who’s 14 years older than me, so I don’t remember his early development) fit the hyperlexia profile to a T when she read about it, but it sounded to me like he had more standard expression and comprehension (at least after a point) than I did, and was more able to retain consciously-learned information (which he in fact heavily relies on), which is why as adults we have such a disparity in appearances (to a typical eye).

    But… yeah. It’s strange (or maybe not so strange, given my comprehension levels) that I’ve read about hyperlexia before and never realized precisely how much I fit the profile.

  11. The Integral says:

    we all fit some of that description to varying degrees as well………….

    Interesting. Thanks for sharing.

    Muskie, if you are reading this, you have a donation to process at autistics.org.

    Amanda, if you don’t want me posting stuff like that here, I will refrain in the future but wasn’t sure how else to get the message through……I’m not sure how inundated you two are with email…….so I didn’t use that avenue of communication on purpose.

    TI

  12. Eleanor says:

    Wow, Amanda. I’ve always assumed that you were hyperlexic, just based on my reading of your website. But I guess that it is not surprising that you didn’t actually know this, as it is not a “diagnosis” in the normal sense of the term, and not even that well known. I didn’t know I was hyperlexic (that is, I didn’t know that there was a name for my condition although I knew that my ability to read far exceeded my ability to listen) until my son, who has alot more symptoms of autism than I do, was given that label by a speech therapist. It turns out my mom is hyperlexic as well… Guess there is something to be said for genetics, huh?

    Anyway, although there is a lack of concensus about exactly what hyperlexia is, here is my spin on it:

    (a) A hyperlexia is the ability to decode written language before one develops the ability to decode spoken language, and in some cases instead of decoding spoken language.

    (b) Decoding and understanding aren’t the same thing. Some hyperlexics may have deficits in understanding any type of language, but some do not. And some may understand written but not spoken, or written better than spoken. The later clearly describes me and my son. (Note this differs from the passing reference to hyperlexia in the DSM 4′s autism section, that implies that hyperlexia involves decoding without understanding.)

  13. Well, I knew that I fit some term or another of hyperlexic, but I didn’t know that my difficulty understanding all language was considered part of it, nor did I know a lot of the details, including echolalia and stuff without necessarily comprehension. All of which describes my language-learning stuff way accurately in a way I haven’t seen much before in anything but Donna Williams’s writing (and hers is slightly different than mine but closer than anything else I’d seen — and unlike her, I don’t think language/symbol comprehension is the difference between “autism” and “Asperger’s”, but I do think it’s a difference between people I tend to identify really strongly with and people I don’t, because she’s right that thinking develops very differently that way).

    A lot of the stuff described there is what I mean when I say there’s a lot of things in between speaking (with full understanding of what you say and the purpose of it) and not speaking at all, and that I have spent most of my life in the middle of those even at the times when I’d managed superficial comprehension.

    I am not sure I agree with the article that hyperlexia and dyslexia are opposites. Dyslexia and hyperlexia both seem to run heavily in my family and the only difference I see between the two is that hyperlexia involves better decoding skills earlier in life (since clearly when some dyslexic people do learn to read they run into the same trouble hyperlexic people do).

  14. Eleanor says:

    Regarding whether dyslexia and hyperlexia are opposite: I recall reading a news article sometime in the last year or so about some studies of brain imaging of hyperlexics and dyslexics that I think indicated that the part of the brain that is underactive in dyslexics is overactive in hyperlexics, and vice versa. I’m not that familiar with dyslexia, though, so I don’t know how seriously to take that study.

  15. I noticed the other day, how much of my day I go through without even having a clue what anyone is saying.

    We spent…. most of our school years like that, really. People inadvertently took advantage of our pre-existing tendency to go along with things whenever someone gave a name to a problem we couldn’t find the words for, regardless of whether what they called it was anything like the real problem or not. Teachers would get in our faces and scream “You CHOOSE NOT TO PAY ATTENTION” and similar things, and because it was said so often by so many people, we concluded that that really was our problem– that there was this single, simple mental process called “attention” that we had the choice to give or not to give, but we were obviously a terrible person because most of the time we chose not to give it.

    I’ve found many similarities in my life to dyslexic people, and found that my version of hyperlexia feels like a version of dyslexia only without any trouble decoding words (and while some people claim decoding words is the only problem dyslexic people have with language, it really isn’t, at least not always).

    …yeah, we noticed that with ourselves a few times. The comparison didn’t occur to us for a long time, because we simply thought that “dyslexia means you can’t read,” and if someone put a book in front of us, we could obviously read it, whether we took any meaning from the words or not. I think one of the major points of connection for us was when we remembered reading something about dyslexic people who felt embarassed and obliged to hide their dyslexia, and came up with ways to disguise the problems with reading they were having. (Though we read it the first time around without realizing how it could apply to us.) We definitely came up with a lot of ways to “hide it,” and we were humiliated because we were supposed to be so “verbally gifted” (according to a bunch of tests) and have this astronomically high reading level, and people gave us books as presents all the time, yet we couldn’t read many of them. Sometimes we’d go around reading a book even when we didn’t understand most of it, just to maintain that image in other people’s minds. If other people asked us what we thought of it, we’d just make up something vague. Other people would talk about having read books we couldn’t (especially when we began to practice communicating online), and we’d pay as much attention as we could to what they were saying, then modify it a little and repeat the things *they’d* said in other discussions about the books in question, so it’d look to others like we actually had read them.

    We were told that there “wasn’t anything abnormal about your development,” but the more we look back on it, the more we realize this was some kind of deliberate lie, because there was obviously plenty of stuff that wasn’t normal. I think everyone was really *relieved* when we started reading, because it meant they could dump the “gifted” label on us instead of any kind of pathological one. I know we we did have a jump in language when we were about 6, but it was more in spelling than in reading. We had learned to read by memorizing the shapes of words, not the actual letters in them, and so when trying to spell a word, we’d measure it against our visual memory of what the word looked like. After 6, we started noticing the actual letters and so we rarely spelled anything wrong from then on.

  16. Mom says:

    “The only part that I don’t remember in particular is a fascination with letters and numbers, I remember being fascinated with a lot of things but I don’t remember that. (I’m sure my mother can correct me if she reads this.)”

    Amanda you did have a fascination with letters and numbers at the age of 12 months. This was really the beginning of your reading. Your number ability seemed more spatial as you related numbers to blocks you handled and did simple math with them. You fell asleep with books in your crib as an infant and was so fascinated with astronomy at an early age that you had read all the adult astonomy books in the local library by the time you were five.

    “I know my mom also said that my brother (who’s 14 years older than me, so I don’t remember his early development) fit the hyperlexia profile to a T when she read about it,”

    Your brother was reading spontaneously off of a milk truck while sitting in his car seat at the age of 18 months. He also had a fascination with the t.v. show Concentration at the same time. His memory seemed to be close to photographic at an early age. I used that a lot when shopping as he could remind me of exact labels at home if asked.
    At the age of 12 he noticed a change in the photographic memory and was quite upset by it. I find his memory now still quite phenomenal for details like license plates, addresses and phone numbers.

  17. Riel and Julian ^ Amorpha:

    “Teachers would get in our faces and scream “You CHOOSE NOT TO PAY ATTENTION” and similar things, and because it was said so often by so many people, we concluded that that really was our problem– that there was this single, simple mental process called “attention” that we had the choice to give or not to give, but we were obviously a terrible person because most of the time we chose not to give it.”

    Yeah, I hate when people seem to just assume that attention is necessarily a voluntary thing for EVERYone just because it is apparently a voluntary thing for THEM.

    I have attention deficit disorder, which was not diagnosed until I was 26. I was lucky in that none of my teachers were abusive to me about it–no yelling in my face. But when I was younger, in elementary school, I was always getting lectures about how I needed to pay attention more and start work promptly when it was time to do classwork, no more dawdling. At one point, in seeking clarification, I asked if by “paying attention” they meant that I should do better at drawing my attention back to the task at hand when I felt it wandering. The answer was that I should simply be paying attention in the first place. This left me extremely perplexed because I could not even imagine the possibility of actually paying attention and maintaining that attention without any mental distractions–all just by choosing to do it. I felt enormously frustrated that the adults in my life couldn’t seem to see that this was something I didn’t understand how to do, and I couldn’t understand why they didn’t simply EXPLAIN how to do it. They seemed to think that it was the kind of thing that can’t really be explained, that it should be something that you just learn how to do like a toddler who learns how to walk without being formally taught. But to my mind, I thought there must be some mysterious process they did to “choose” to “pay attention” — because the idea of simply doing it without any conscious effort beyond that choice was just too perposterous to be believed. And I was sure that it WAS like walking — sure, walking BECOMES an unconscious process to the point where most older children and adults no longer think about it, but it is still possible to slow yourself down a bit and *observe* the walking process as you do it and break it down into multiple pieces. I didn’t do this as a child, but I figured it must be possible. And, in fact, after I acquired a chronic foot problem as an adult, I have now to some extent analyzed my own process of walking and climbing down stairs etc. in my attempt to understand why, for example, going down stairs is more difficult for me than going up stairs, etc. So I’ve even proven to myself that there IS a way, at least to some extent, to “explain” the process of walking. And I was convinced as a child that there SHOULD be a way for adults to similarly explain the process of “paying attention” to me if they would just take the time to try.

    But of course no one ever did explain to me how to just “choose” to pay attention. But because they seemed to convinced that I should be able to do it, and because they were so insistent that everyone was able to just do it by deciding to do it, I was still left with the clear idea that there WAS a way (even though it still seemed perposterous to me). So I decided to keep trying until I figured it out on my own. And I tried for YEARS, basically until I was diagnosed. Now I know with an ADD brain that the process of somehow magically just “deciding” to pay attention is just not something my brain does. So, yes, I do still gently draw my attention back to the task at hand when my attention wanders (the solution I had come upon when I was 9 or 10 but was told was not good enough). But the difference is that I don’t berate myself for the fact that it wandered in the first place. And although I still hate that it takes me longer to complete certain tasks (e.g., research papers for school) than someone of similar intelligence and writing skill, I’ve learned to become more resigned to the fact that I simply need to allow time for becoming distracted during the process, and time in the beginning of the writing process where I’m slow to get started. And I’ve learned to be more patient with myself about it.

  18. Ivan says:

    re: Luai_lashire’s comment about eating issues and autism: we could use that information too! If and when you get around to finding it……….

    Mom Baggs: (for lack of better expression………last semester in Tech Writing I had the entire concept of “Ms” drilled OUT of my head)
    “At the age of 12 he noticed a change in the photographic memory and was quite upset by it.”

    Did anything in particular happen to cause this change (eg. becoming more social, having other things capture his awareness, etc. )

    Ivan

  19. Ettina says:

    Regarding the question of whether hyperlexia and dyslexia are opposites…

    Literally, hyperlexia means reading a lot/unusually well and dyslexia means difficulty reading, so in the literal meaning they are opposites.

    However, most hyperlexics and dyslexics have a lot of variability in reading skills. It may be that there’s one person, called hyperlexic, whose reading scores range from well above average to average depending on the skill involved, one called dyslexic whose reading scores range from average to well below average depending on the skill involved, and one who could really be called either because their reading skills rangte from below average to above average depending on the skill involved, and all three could have similar reading profiles (such as decoding > comprehension).

  20. Ivan: Nothing special has to cause it. Eidetic memory is a phenomenon that by its nature occurs in children and then always or almost always fades by adulthood.

  21. Ettina says:

    “At one point, in seeking clarification, I asked if by “paying attention” they meant that I should do better at drawing my attention back to the task at hand when I felt it wandering. The answer was that I should simply be paying attention in the first place.”

    Another example of how adults should listen to kids. You gave them an important hint about what was going on in your mind, but they dismissed it.

  22. Literally, hyperlexia means reading a lot/unusually well and dyslexia means difficulty reading, so in the literal meaning they are opposites.

    Yeah, but hyperlexia in the way it is normally used as a learning disability, has to do with good decoding skills and bad reading comprehension (in extreme cases, such as mine, good decoding skills before I even knew what written language was otherwise for, let alone was able to even try to pull meaning out of it).

    In my case, in anything but the sorts of words I learned by rote (and I learn them as wholes, not parts), I regularly transpose letters and everything just like a dyslexic person does. I do the same thing to numbers. I have serious problems with reading comprehension, even my single-word reading comprehension lags behind my typed language repertoire today. (I comprehend 80% of the individual words I can use, according to an estimation process I went through by going through a dictionary and calculating this. And right now is probably the peak of my comprehension.) And this isn’t even comprehension of what they are like when put together in sentences. I flip letters over (actually vertically usually) pretty frequently. I have trouble understanding spoken language, bad organizational skills, and a terrible short-term memory (I score from 64-78 on the Weschler tests of short-term memory, those scores are distributed in the same way an IQ score is). I have trouble viewing sounds as having symbolic meaning. I have mangled visual perception (I don’t know any other way to put it) as well as auditory. My reading and reading comprehension improves if I use certain colors of paper. And I have a family history of both dyslexia and hyperlexia.

    All of those traits are dyslexic traits, except my weird ability to decode words, which bumps me into hyperlexia. But a lot of those are hyperlexic traits as well. I have had a lot of people ask me if I was dyslexic ever since I was a kid, including dyslexic people and their relatives.

    Another example of how adults should listen to kids. You gave them an important hint about what was going on in your mind, but they dismissed it.

    Yeah.

    I’ve often wondered about some adults.

    Like, I was always just told to “get organized”. I started really, really hating that phrase because it usually came before an attempt to punish me for being unable to do something.

    I got to the point where, they kept me after class, or after school even, to clean my desk or my locker at school.

    (By the way, I know that my punctuation is unusual in sentences like the last one. However, I do it to make it easier to split up parts of the sentence. I wonder if anyone else does this?)

    I would then try and try and never manage, ever, to get it even close to as neat as anyone else’s. I was clearly putting a lot of time and effort into it. I was clearly not even stopping. And yet I could not do what everyone else could do. And I would usually end up crying, very hard, by the end of it, because it became painful to try to force myself to be able to do it, and because my vision was so fragmented that I couldn’t even see what I was looking at.

    (My vision was tested at one point and they told my mother some really sexist crap about little girls, because I could read individual letters on a vision chart while my actual vision as processed by my brain was distorted and fragmented and scrambled, and more so the more overloaded I got.)

    So I couldn’t see what I was looking at, I couldn’t put any steps in order, it eventually became very clear, whether they recognized those specific things or not, that I was incapable of putting nearly anything in order. And yet they still thought that punishing me and scolding me would make me better at it. All they did was make me hate myself, they didn’t make me able to do anything.

    And one thing I don’t get… as a kid this was “disorganization”. As an adult, lacking the same skills makes me “severely deficient in adaptive behavior skills”. Supposedly that’s a major change, but it’s the exact same skills I’m lacking.

  23. Mom says:

    As far as “paying attention” in school was concerned..your brother had this problem too…It seemed more like everything was distracting him and he had difficulty focusing..His innovative teacher made a sort of “blinder” around his desk to filter out other visual stimuli. He also would take him on any field trip first by himself so that when he went with the class everything was more of less familiar. He had a fascination with numbers too and I remember before entering pre-school the teacher asked him to write down the biggest number he could think of. He picked up the chalk and drew and infinity sign on the black-board.

  24. Norah says:

    I was an early reader and am still a quite obsessive reader, so I have wondered if I might be hyperlexic, but looking at the criteria for hyperlexia, it seems I was just a very early and fast reader. I started speaking well before I started reading, was quite early with that too. Not that I don’t have problems with expressing language and language comnprehension, but they seem to be different, or not present all the time at the least.

  25. AnneC says:

    Amanda wrote: I got to the point where, they kept me after class, or after school even, to clean my desk or my locker at school.

    That sounds familiar. :/ I remember one thing teachers used to do to me a lot was pick up my desk and literally dump all the contents out onto the floor outside the classroom (so that I’d have to pick everything up and put it back, theoretically in a more organized manner).

    Regarding the hyperlexia thing: my parents recorded in my baby book that I was identifying letters and numbers on food packages, store signs, billboards, etc., by 13 – 14 months of age, and that I enjoyed reading books on my own by 24 months. I can barely remember not knowing how to read.

    However, I did have some weird comprehension difficulties. I could recognize individual words very readily, but not if they were “split” in any way. I had a magazine about elephants as a kid (probably when I was around 6) and there was one section where they described the elephant’s diet as including “pota-
    toes”.

    Basically, the word “potatoes” was cut off halfway through and finished on the next line in order to accommodate text column limitations. But for years I would read that section of the book and wonder what the heck a “pota-toe” was…I thought maybe it was some weird kind of toe that elephants liked to eat. One day I did manage to put the pieces together and figure out that the elephants simply liked to eat “potatoes”, but it was a very long time coming.

  26. Mom says:

    I find it interesting to read so many common factors in early readers…I remember the growing library…and trying to keep track of all the library books due this day and that…We used to mark the numbers on different days on the calender…I am talking about as many as 18 books at a time…and when the day came we had to hunt for them….and this was always like an archaeological dig…..

    I can’t remember a single parent/teacher conference where they did not complain about the messy desk…messy backpack…lack of social interactions..Organizing a desk or your own room seemed well beyond your abilities..and this was not from lack of your wanting to…I think the only time I actually insisted you “clean” your room was when you lost your pet Mexican Rosey Boa snake…and I did emphatically say you had to stay in there until you found him!

  27. I think we eventually did give up and assume the snake had either gotten out of the house or died, and then he turned up alive and well under my bed one day.

  28. I was clearly putting a lot of time and effort into it. I was clearly not even stopping. And yet I could not do what everyone else could do. And I would usually end up crying, very hard, by the end of it, because it became painful to try to force myself to be able to do it, and because my vision was so fragmented that I couldn’t even see what I was looking at.

    We had that with some school and homework assignments. The more we tried to focus on it, the more our comprehension and even our ability to read what we were looking at would fragment. (I think a lot of it also had to do with the fact that we had to do most of this under fluorescent lighting, although sometimes we could do things at school that we couldn’t do at home just because there were certain mental processes triggered by being in a school environment that we couldn’t spontaneously initiate outside of it.) And all people would do was stand there yelling “you’re not working, you’re not trying” when we felt mentally as though we’d just done the equivalent of running several miles, and still fallen short of the goal.

    andreashettle: We actually find a lot of similarities in ourselves to ADD and ADHD people, like we do to dyslexic people, even though we don’t personally choose to use those labels for ourselves. We have something that we wrote somewhere, but never finished, about how what people refer to as “attention” and “paying attention” is actually a combination of several complicated mental processes that most people think always work together, but don’t necessarily (same as for movement, and moving voluntarily vs. moving involuntarily). And we don’t have the same capacity for each of those processes, though of course it changes from day to day. Which is… pretty much like what you said about breaking down the process of walking, I guess. So, people who naturally and routinely can voluntarily operate all the processes (word recognition, translating series of words into sentences with meaning, etc) that have to work together in order to “pay attention to something” tend to assume it’s just one process, if all those processes align so closely for you as to be indistinguishable most of the time, and you have roughly the same capacity for each of them.

    We’ve also had the experience of being *told* we were not listening or paying attention, or hearing someone’s voice as being just a jumble of word noise with occasional recognizable words, and somehow absorbing something from it anyway, or having everything mentally align for periods of seconds or minutes and clearly understanding what that person is saying during that time, but then having the processes fall out of alignment again and going back to noncomprehension.

    Ivan: I don’t think we probably ever had what could exactly be referred to as a photographic memory. However, we’ve noticed that our visual recall ability did change over time. In our early to mid 20s, our ability to keep small, detailed visual memories of things actually *improved,* and we’re still not sure why. Although we’d had the ability for a long time to do things like “keep houses in our head,” in the sense of remembering where every piece of furniture was and so on. (We tended to get kind of distressed if we did something like go to a relative’s house and find that they had moved their furniture around from the configuration we remembered.)

    AnneC: We remember having problems with words that were either split up (for instance, we remember that in one context, when we were about 10, we read the word “chainsaw” written as “chain saw” and couldn’t connect it to the word we knew), or when words we knew individually were compressed into one word. At about the same age, we were looking at a catalog selling a brand of sunglasses called “Cateye”, and mentally we decided that should be pronounced as “cat-ee-yee”, instead of recognizing that it was “cat” and “eye” together.

  29. Riel and Julian ^ Amorpha:
    I know whenever autistic people on-line start talking about executive function issues (for example, Amanda’s post on making a phone call in 70 easy steps), I find a lot of similarity also, with the main difference being one of degree. For me, a phone call might take 20 to 25 steps rather than Amanda’s 70–though that does still assume that inertia doesn’t become so strong that I fail to make the phone call at all. It can sometimes take me weeks to make a phone call.

    You said “And all people would do was stand there yelling “you’re not working, you’re not trying” when we felt mentally as though we’d just done the equivalent of running several miles, and still fallen short of the goal.”

    I know how frustrating that can be. There were so many times when I was growing up when I would really struggle to stay focused on my homework–whole afternoons or full days spent in enormous struggle. Sometimes I did read during this time, but the whole time I would be thinking about the work I needed to do and struggling with every word I read to make myself stop and put down the book and go back to my homework because I knew that was what I really needed to do. And then if I was caught reading (while three-quarters of my mental energy was actually still being invested, EVEN WHILE DOING SOMETHING ELSE, in trying to pull myself back to my homework; or other times, maybe I was reading but not actually as a break from work but in despair because I had already tried so hard to focus on my work and wasn’t getting anywhere) I would get scolded for it because I hadn’t been working enough yet to warrant a “break” from it. It took me well into adulthood before I could learn to take a proper break from work when I needed it because every time I did, I felt like I was doing something wrong because I hadn’t “earned” it yet by NOT just trying to work but actually PAYING ATTENTION during it and PRODUCING something visible.

    I can’t blame my parents for thinking I was taking a break when I wasn’t (from the outside, it looked identical, they couldn’t know without reading my mind). But it was still enormously frustating that all the effort and energy I was investing was so entirely invisible to anyone looking at me from the outside. And as said above, it very badly distorted my sense of when I needed to stop trying and take a REAL break, for VERY many years.

  30. Lisa Helt says:

    I just wanted to mention that I just finished reading Tito Mukhopadhyay’s new book, “How Can I Talk If My Lips Don’t Move” and I really thought it was great! He talks a lot about his perceptions and how they differ at times from other peoples perceptions.

  31. Allegra says:

    Hi Amanda,
    First of all, thank you so much for this blog–I’ve been reading for quite some time now, but I think this is only my second comment. I’ve learned so much here, more than I could ever say.

    Anyway, I’m looking for fictional works by autistic people with one or more disabled characters. Anything you can come up with would be great. Thanks!

  32. Dilara says:

    i want to read a book written by an autistic just like an autobiography to see how they think something like that :}

  33. Can anyone with more energy go through this booklist and return a list of the ones that are autobiographies? And also of course, if anyone knows them, list autobiographies that are not on the list, feel free to chime in as well.

    Basically, there’s a huge number to choose from. My completely biased recommendations of the moment (my opinions are often shifting depending on what aspect of them I’m interested in or repelled by at any given time, which can be things as shallow as the writing style’s readability to me-in-particular, which is why I say it’s completely biased) are Nobody Nowhere, Mozart and the Whale, Songs of the Gorilla Nation, Congratulations! It’s Asperger Syndrome, Lucy’s Story, A Real Person, Finding a Different Kind of Normal, Emergence, Soon Will Come the Light, Reflections of Self, Beyond the Silence. All probably for different reasons.

  34. Tera says:

    Hi, Dilara,

    As Amanda said, there are a LOT of autiebiographies to choose from. Here’s a post she wrote about a couple of them:

    http://ballastexistenz.autistics.org/?p=71

    The two most recent ones I’ve read or am reading are “Born on a Blue Day” by Daniel Tammet and “How Can I Talk if My Lips Don’t Move?: Inside My Autistic Mind” by Tito Mukopadhyay. (This is Tito’s newest book; he also wrote “Beyond the Silence,” mentioned above).

    It’s hard to know which autiebiographies to recommend, because there are so many and while lots seem to follow a formula, they’re all different from each other. For instance, the more autiebiographies you read (and the more autistic people you talk to), the more you realize that no two autistic people think alike.

  35. Dilara says:

    Dear Tera and Amanda,
    Thank you for the suggestions, i will go to the nearest broders and buy a few. You see my brother is autistic and i wanna learn how he thinks he is very intelligent and i love him to death

  36. Ettina says:

    Do you know of any books by autistics who:
    * have very mild social problems (can act NT 1:1 with little effort, but have trouble in groups)
    * are extremely creative and into fantasy
    * are afraid of people bossing them around to the point of having meltdowns when given orders (esp in childhood)
    I have all those traits and recently found out this defines a unique subtype of autism.

  37. Ettina says:

    Also, there’s a book I found called Jordan: Living with Autism and Multiple Complex Developmental Disorder. It’s mostly by her mother, but Jordan (seven years old) wrote parts of it by dictation. One thing I find interesting is that she has pretty obvious speech problems, in terms of poor grammar and disorganized speech and such.

  38. Denise Junk says:

    I would like to send you a book written by an aspie . He is 65 and has not been Dxed but I believe that he is on the spectrum. I am 45 and was Dxed a few years ago . I’m learning book binding so that we can self publish . You can read more about the book on my blog if you go to the beggining . Lately I have been mostly blogging about my crafting stuff .

    The book is about a group of girls 40,000 years ago with spectrum traits that are actually assets in that environment . I guess it is a bit like Clan of The Cave Bear but focuses more on how autistic traits could have evolved and the connection between this group of girls and their wolf friends . We hope to eventually turn it into an anima and add some graphics to the book but we are on a minimal budget right now .

    Anyway, if you are interested in the story, let me know how to send it to you .

    Thanks,
    Denise

  39. I want to find books by or about you, Jim Sinclaire and Ari Ne’eman for a history paper other non-book sources work too.

Real comments from here on out:

This post is mainly for three sorts of people, who are in some ways really one sort after all.

Standard

I’m going to post a link.

If you ever argue that autism and/or Asperger’s is “not a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something positive in contrast to typical people, then please read it. The person who wrote it directed it mostly at you.

If you ever argue that autism and/or Asperger’s is “a disability” because you think this configuration of our bodies partially, mostly, or entirely provides something negative in contrast to typical people, then please read it. This goes double if you argue it for something you call “low-functioning autism” but not for other autistic people. This goes triple or even more if you want to cut “high-functioning autism” and/or “Asperger’s” off of the “autistic spectrum” because they’re “not disabled” and “low functioning autistic people” are disabled. The person who wrote it only directed part of it at you, but from the standpoint he’s talking about, your viewpoint is nearly identical to the viewpoint I described in the first paragraph.

And of course, the viewpoint he’s talking about is also really important for you to read if you’re the sort of person who says it’s “neither an ability nor a disability,” or “composed of both abilities and disabilities,” or “both an ability and a disability,” or similar wording, because it’s also from the viewpoint he’s talking about pretty identical to the first two paragraphs.

And for everyone else, including those who know the general viewpoint he’s coming from already, the advice he gives is still really good, so go read it too.

His post is called Welcome to the disability community. In general, go read it. Multiple times if necessary. Then seriously consider taking his advice.

Last night, I got involved in a discussion of disability rights with people who mostly had some background in that area. Some of them were autistic and some of them weren’t, but most of them had heard, at least somewhat, of the standpoint on disability I come from, which is that disability is the intersection of your body with a world that has planned for some sorts of people and not others, when you’re one of the “others” that wasn’t exactly planned for. Things that would not be barriers to people that it was planned for, become barriers to you because you weren’t among those planned for.

The most common examples of barriers are physical, both because they’re concrete and easy to describe, but also because there’s an often-unspoken hierarchy in the disability community that has fought for the removal of these barriers, and we’ve got more practice talking about wheelchair ramps in the offline world and blind access in the online world than we’ve got talking about making the online world accessible to assorted kinds of cognitively disabled people or making buildings accessible to people for whom the most common forms of fluorescent lighting impair their ability to think or move.

If either I or my friend want to visit each other in the public part of our building, for instance, it’s almost perfectly wheelchair-accessible. The hallways are wide and flat and there is elevator access to the entire building. There are stairs, but they are optional. Many wheelchair users in the disability rights movement would stop right there and claim that the building is “accessible”. However, the public areas of the building are also fitted with old-style fluorescent lights. This gives us both some combination of migraines, seizures, and general levels of confusion. (How much confusion? When I was a teenager I took a night class under fluorescent lights, they were the only source of lighting and there were lots of them. My mother would pick me up in a brown minivan. I came out at one point and tried repeatedly to get into a little white car. I was pulling on the handle and everything. The driver did not look close enough to my mother for even me to confuse them, and the dog in the car didn’t look like my dog either.) Tinted glasses help to an extent but they don’t fully solve the problem. So the hallways are actually not fully accessible to us.

Cal Montgomery wrote some interesting stuff about this in the essay The Way Things Are. Don’t be put off by the fact that it’s about Foucault if you’re normally (as I am) put off by postmodernism. She makes some good points and she makes them in everyday language. She, like both me and my friend, finds both stairs and fluorescent lights to be access barriers. She writes about a meeting of her local CIL (Center for Independent Living) that she was invited to. They told her it was “accessible” when they really meant wheelchair access. It was really held in a room with fluorescent lights, by people who both knew that was a barrier to her and had access to a room that was both wheelchair-accessible and lacked fluorescent lights. Then she invites us to think about the fact that we often think the way things are is the only way they ever could be. She writes:

Some of us believe that “high-functioning people” or “the invisibly disabled” or “people who only use wheelchairs” don’t face any real disadvantage and therefore don’t need either cures or rights; some of us believe that “low-functioning people” or “mentally retarded people” are disadvantaged by medical conditions alone and therefore aren’t the concern of the disability rights movement; some of us believe that alcoholics drink for moral and not medical reasons and others believe exactly the opposite; and most of us have probably never seriously questioned all of our beliefs along these lines.

The way the “cross-disability” sections of the disability rights and the independent living movements are dominated by certain categories of disabled people seems natural to many people, but it could have gone another way. The movements have come to believe that it’s important to get wheelchairs into classrooms and jobsites and housing and CILs that are built to accommodate them. They haven’t come to believe that it’s important to do the same thing for people who can’t manage under fluorescent lights. But it could have gone differently.

Imagine for a moment that the disability rights movement had not arisen during a time when there were not so many white-collar jobs in America, but rather during a time when the majority of us were expected to do physical labor.

In such a time, with an “able body” being more important than an “able mind” it’s entirely possible that people with cognitive impairments might have come to be the paradigmatic disabled people around whose needs the whole thing was organized. After all, our physical accomplishments would have a whole lot more to do with our places in society than our cognitive accomplishments. We might have come to see a fluorescent-infested environment as unjust earlier than we grasped the injustice of stair-infestedness, and my local CIL might have mentioned, under “Access Accommodations,” that the annual meeting would be held on the second floor of a building with no elevators.

An interesting thing about the disability rights movement, that many people in the autistic community have not yet realized, is that a lot of the fights for access do not depend on what condition you have. Standard fluorescent lighting is inaccessible to many autistic people. It’s also inaccessible to many people with migraines, epilepsy, people who don’t have epilepsy but who are on medications that lower the seizure threshold, multiple sclerosis, and a number of other conditions. And people with these various conditions can all work together to make sure that there is some kind of lighting, whether incandescent, some other kind of fluorescent that causes fewer problems (especially, if bright, if the lighting is indirect rather than direct), or light-emitting diodes, that is accessible to more of us.

At any rate, it makes sense to me that people haven’t heard a lot of these ideas, but there’s a really good reason for familiarizing yourself with these ideas, which is that a lot of the groundwork has already been laid for us, and a lot of us are spending a lot of energy, as Joel put it, reinventing the wheel, when we could go a lot further than that a lot faster if we knew the background of what’s already happened that makes a lot of things possible — and if we knew what was possible.