I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.
At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.
I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.
At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)
Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.
I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.
Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.
Meanwhile, I had been trying to function.
I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)
I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.
I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.
People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.
I left university and found the snake lady.
And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)
There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.
It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected
It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.
It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.
It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.
For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.
Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.
One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.
The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.
Ballastexistenz 
January 6, 2008 at 8:43 pm (Edit)
[…] I can help you look for books by autistic people. […]
January 6, 2008 at 10:10 pm (Edit)
Could you please recommend autobiographies written by hyperlexic individuals.
January 7, 2008 at 1:27 am (Edit)
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.
January 7, 2008 at 6:56 am (Edit)
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.
January 7, 2008 at 7:21 am (Edit)
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.)
January 7, 2008 at 5:59 pm (Edit)
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.
January 7, 2008 at 6:02 pm (Edit)
“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.
January 8, 2008 at 3:56 am (Edit)
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.
January 10, 2008 at 6:50 am (Edit)
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.
January 10, 2008 at 5:25 pm (Edit)
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:
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:
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).
January 10, 2008 at 5:38 pm (Edit)
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.
January 10, 2008 at 7:43 pm (Edit)
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
January 10, 2008 at 8:16 pm (Edit)
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.)
January 10, 2008 at 8:42 pm (Edit)
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).
January 10, 2008 at 9:32 pm (Edit)
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.
January 11, 2008 at 2:22 am (Edit)
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.
January 11, 2008 at 3:44 am (Edit)
“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.
January 11, 2008 at 1:14 pm (Edit)
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.
January 11, 2008 at 3:12 pm (Edit)
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
January 11, 2008 at 4:15 pm (Edit)
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).
January 11, 2008 at 4:27 pm (Edit)
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.
January 11, 2008 at 4:33 pm (Edit)
“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.
January 11, 2008 at 5:31 pm (Edit)
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.
January 11, 2008 at 5:34 pm (Edit)
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.
January 11, 2008 at 5:55 pm (Edit)
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.
January 11, 2008 at 10:38 pm (Edit)
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.
January 12, 2008 at 12:07 am (Edit)
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!
January 12, 2008 at 3:46 am (Edit)
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.
January 12, 2008 at 5:15 am (Edit)
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.
January 12, 2008 at 12:41 pm (Edit)
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.
January 16, 2008 at 5:34 am (Edit)
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.
February 5, 2008 at 4:15 am (Edit)
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!
March 29, 2008 at 5:59 am (Edit)
i want to read a book written by an autistic just like an autobiography to see how they think something like that :}
March 29, 2008 at 3:36 pm (Edit)
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.
April 1, 2008 at 8:20 pm (Edit)
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.
April 4, 2008 at 6:48 pm (Edit)
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
August 5, 2008 at 11:18 pm (Edit)
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.
August 5, 2008 at 11:21 pm (Edit)
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.
November 20, 2008 at 8:49 pm (Edit)
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
February 12, 2009 at 5:13 am (Edit)
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.