Monthly Archives: November 2007

Die, nerves, die. :-P

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Just a note to say I went to get my nerves killed today. It’ll take at least a week for them to completely die off. And it’s apparently just the pain nerves, so I’ll still have sensation in that side of my face.

Which means I can finally go back on the two different pain meds that I hadn’t been allowed before the procedure.

And my mom’s coming out to help me out in the meantime.

Fortunately they didn’t use as much local anesthetic this time (or else it just wasn’t too effective), which meant that the procedure hurt more but also that I’ve experienced none of the immense shock of the local anesthetic wearing off that I experienced the last two times. The procedure can’t hurt more than some of the things the nerves were doing on their own, so it wasn’t that big a deal.

From what I’m seeing on the net, the nerves eventually do grow back, but often without pain returning.

Bit of an update.

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Since people have been asking.

The steroid nerve block didn’t work. And the pain in my face continues to be often worse than the pain they (temporarily) created when they injected things straight into the nerve.

But what they are going to do is some kind of procedure that slowly kills the pain nerves on that side of my face, but leaves all other nerves intact so I will still have feeling but won’t have the constant pain. I went in yesterday to have that done on my maxillary and mandibular nerves, and was going to have it done on my ophthalmic nerve later when the specialist got back from being out sick. (The ophthalmic nerve is harder to reach and more dangerous to work on.)

However, they couldn’t find my maxillary nerve, as far as I could tell. So they are waiting for the specialist to come back before they do any of them. I will get a phone call and when that phone call happens I will go to the clinic that day, whenever that day is, to get the procedure done. They seem extremely aware this is at the point of being a crisis and want to get me in as fast as they can.

In the meanwhile, I yet again experienced the effects of having two of the three facial areas partially numbed and then back to normal again. Yet again it felt like two walls slamming down, one between me and my body and another between me and the rest of the world. It’s very strange, still, when having something numb makes it feel more like part of you than feeling it does.

Whenever they do this, they said that they’ll put something in the pain nerves, but that it will take up to a week for those nerves to fully die off.

In the meanwhile, I’m functional part of the time. I’m getting over a mild pressure sore caused by sitting in bed all the time in one position because of this pain. A lot of the time I’m really not doing much of anything. If you see me online it’s likely I’ve connected from bed either at home or from a neighbor’s couch I’ve been staying on since I can’t even microwave my own meals at this point most of the time (nor can I always operate a computer, even from bed, or have an attention span longer than a second or so, etc). Meanwhile the only pain meds I’m allowed to take are giving me seizures and when I get really drowsy (which the pain somehow makes me drowsy even without meds) they also give me mild hallucinations while still awake. And one of my most familiar staff people moved out of state, another quit all but one day of the week to take care of her kids since one of them developed an autoimmune disease, and new people are being trained in the middle of this mess. My doing anything will continue to be completely sporadic and unpredictable. I’ve been working on a few posts but they’re still in draft form.

And my main goal at the moment, as my friend put it, is to continue existing until I do get treatment for this, anything else is optional. She’s meanwhile experiencing some kind of either Sjogren’s flareup or odd systemic infection, so she’s not at her best either (she regards it as an accomplishment to sit up for a few hours at this point, and it’s possible she’s going to end up in the hospital or on lots of IV treatments or something). And yet she says she’s more functional than I am at the moment. Yet another interesting scenario of a couple of gimps attempting to take care of each other (hopefully she won’t be attempting any more wheelchair transfers of me, though, because last time she did that she dumped me on my face ;-) ).

Typing and Public Speaking – not just for auties?

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I just found something a non-autistic man wrote to me about public speaking. He said that he was amazed I could do that, because he could just not stand up in front of an audience and give a speech. I have heard that the fear of speaking in public is one of the most common human fears in general.

It reminded me of something I noticed that was different between when I spoke out loud and when I used a keyboard to communicate. Speaking out loud, even when I had the capacity to sound like quite the chatterbox (which was often the result of a sort of inertia where once I started I could not stop even as it got more and more uncomfortable), has always been difficult for me. It has always resulted in physical pain, overload, confusion, and loss of other abilities including comprehension abilities.

When I was 13, I was part of a group called the Junior Statesmen of America. I don’t even remember how I got involved, I just sort of bumbled into the meetings and then into a conference that was being held very near where I lived. I have vague memories of lots of high school students getting drunk while I stood around puzzledly watching them vomiting on chairs and the next day showing the same signs of overload that I always had without a hangover. Anyway, they allowed people from the audience to stand up and join various debates. Speech was beginning to be obviously intermittent to others at this age, but I knew nothing of overload or of the pattern of why it was becoming so intermittent.

At any rate, at one point I was first in line from the audience to talk during a debate. For some reason, they tried everything they could try to skip over me and let someone else talk, before I even got a chance to say anything. But that got resolved. So I stood in front of the room.

I had the entire general pattern of what I wanted to say in my head. It was there. The problem was there were no words in it, and in that situation, even the slight extra stress of standing in front of an audience prevented me from coming up with words. I bumbled and muttered a little bit. The audience started shouting insults at me. And I sat down humiliated and confused as to why I could not speak.

When speaking came up in classes on the topic, I was sometimes slightly better than that but not by a lot. I delivered speeches in a scattered sort of way while staring at the ceiling. I got lowered marks for this. Because of all these things, I never really viewed myself as someone who could be capable of public speaking. I didn’t have the body language, I didn’t have the words, and I didn’t have the confidence, as far as I (and my teacher) was concerned. And keep in mind this was all when my speech was pretty much at its best on a superficial level (it was cutting out but when it was not cut out it sounded pretty good).

In 2002, I attended a conference called the Community Imperative. This was after the shift from part-time use of a communication device to full-time use had already occurred. I learned a number of things at the conference. Shortly after the conference I sent a whole list of those things to some of my friends. It included:

6. I am better than I thought at speaking to large groups, when typing. My previous problems with it appear to be speech-related. I was shaking hard the first time I did it, but after that it was surprisingly easy.

Basically, while I might still have some element of fear overriding language production while typing, it doesn’t always override things so much that I can’t type a coherent sentence or make a good point.

Which leads me to think that, even during the periods in my life where I did speak in everyday scenarios, I would have found typing a better way to handle public speaking. Which in turn leads me to wonder how many other people — including non-autistic people who just happen to be very shy — would find typing easier for public speaking purposes.

Bev in a recent blog entry called Let’s Have a Conversation said:

This blog is for people who know this to be true, or are at least trying to get it: sometimes, for some of us, talking is not possible. Sometimes it is barely possible and uses up energy that could be spent more productively in other ways. Sometimes talking hurts. Fortunately, there are many other ways to communicate. I believe that nearly everyone can benefit from at least one of them.

I suspect the “barely possible and uses up energy that could be spent more productively in other ways” thing could apply to a lot of people who have trouble handling public speaking. Public speaking puts just enough pressure on a person that something already difficult can become impossible, and for some people the pressure is so intense that even a lot of ordinary things become impossible (such that even a person who didn’t really have much trouble speaking could have trouble with it when put on the spot). I had no idea I could do public speaking until I got catapulted into a situation where I had to do it using a keyboard. Then I found that despite the fear involved it was surprisingly easy.* I wonder how many other people’s aversion to or sense that they are not good at public speaking is in part because of the complexity of the (oral) speaking aspect of it.

* Perhaps “surprisingly easy” should read “surprisingly possible“. I still find public speaking exhausting and grueling, and I don’t know a whole lot of people who don’t, but however overloaded I am by the time it’s over, I can now do it, and do it effectively, which is not something I used to be able to do (even simply in terms of the ability to get the words out).

Post in anticipation of tonight’s potential deluge.

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A lot of this is borrowed from a comment I made earlier, but I wanted to have a post up today in case people found my blog later on.

I don’t know everything that is going to be on the TV show tonight. I do know that some of it is going to be replayed from last February’s broadcast. After that broadcast, they’d asked if they could do an hour-long special on my life. I said, especially because of the problem of people taking one person as representing a wide range of people, I would rather be one among many people interviewed if I were going to take part in something like that at all. This fall, a number of people were interviewed and filmed at a conference (a conference that had both good and bad points in itself). They planned to broadcast the special next spring.

Then they had a deadline at the news station. They had not had time to sift through all the footage of the conference. They would have to repeat a lot of stuff from February. They said they wanted me to chat online with someone and have someone filming my end of the chat, so they would have more material, and more material that was not just me at that. I could not handle an extra person in the house that day, because I had previously that week been barely able to communicate with support staff, let alone new people, because of a pain crisis. They let me record myself and send them the video file. I did that. They wanted another day of that, but the entire day that would have happened I was in too much pain to talk to anyone most of the day. I don’t know whether what they did get will be used or not. But last I heard the end result was still going to include a lot more focus on me than I’d wanted or agreed to, because they just couldn’t find enough other material fast enough.

As I posted in a comment earlier, my worry is that a lot of people are going to converge on this blog believing either (a) that my life is everything CNN says it is (and only that, or rather and only what they imagine to be part of that), or (b) that I told CNN my life is everything CNN says it is (and only that). Neither of those is the case. There was a lot that happened, and that I told them, that did not make it into the final edits, and the stuff that was left out gave a very different impression than I intended when I talked to them. Sometimes they also said things in the end that I had said the opposite of (for instance I said many times that I am not trapped in my own little world, but the segment started with that). I have no editorial control and I don’t think even the reporter I spoke to has final editorial control.

As such, I’ve prepared a page for this blog called Please don’t take me as typical, to handle all the usual things that happen to me after the media shows me. In the past, the entry Editing covered a lot of what was different between the CNN show and my life. Assorted things I’ve meant to say… covered some other reactions right after the first broadcast. Again and again and again covered the way I responded to one of the questions they asked in email beforehand. And The Awful Prison of Autism dealt with stereotyping in general and sometimes how I felt during the filming in particular.

If anyone gets here through the Channel 4 segment… is a response to a different media portrayal. Let’s play assumption ping-pong is another.

Also note my about page has part of my comment policy on it (and should show yet again that while I get pigeonholed as an ‘autism blogger’ I’m really talking about something broader than that).

A lot of the things I wrote about in why I’m not posting much are still going on, although I’ve got the pain under slightly better control at the moment with assorted combinations of medications. I hope that someone will be around to field questions by pointing people at blog entries the way andreashettle and n. did last time, because I’m rarely up to that kind of thing even when I’m not in this much pain. I’ll understand if nobody can, it’d just be nice. Meanwhile I hope that whatever they do show ends up being a good thing.

Update: because of some part of the news today, it’s going to only be shown part today then part Friday.

Please Don’t Take Me As Typical

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A lot of people come to this blog after they hear of me somewhere as an autistic person, and many might assume that everything I talk about on here, at least everything as relates to disability, is about autism. And as if anything I say about myself as an autistic person will apply to anyone else who happens to be autistic. People also assume their stereotypes about autism apply to me, and it’s very likely they don’t.

First off, in addition to autism, I have general neuropathic or central pain (the source has never been figured out, but it responds very well to neurontin), chronic migraines, trigeminal neuralgia, complex-partial seizures, a movement disorder variously considered catatonic or parkinson-like, asthma, severe reflux (for which professionals keep muttering about fundoplication surgery), very atypical sleep/wake patterns, benign joint hypermobility syndrome (benign means “won’t kill you,” not “painless”), jaw “deformities”, a straight neck with various associated muscle spasms and nerve weirdness, and a slew of other stuff going on. This may sound like a lot of different things, but they’re all in one person. When I talk about myself, I’m not necessarily going to separate one or more of these out, in some cases I can’t. They all have medical terms but they’re all happening in my body. That means when I talk about something about how I work, it may be something totally typical, or it may be related to something else that isn’t really about being autistic.

I use a wheelchair because of stamina issues related to the movement disorder. I know that some television shows have simplified it to being about being autistic. It’s not, except inasfar as the movement disorder itself appears more common in autistic people.

I use a portable keyboard to communicate because of a number of factors. Speech has always been difficult because I am autistic, but I have managed to create passable speech in the past. It is also very difficult, very painful, and uses up all my resources (including language comprehension, which is still something I struggle with on a daily basis, although I cover it up well and have for a long time). And to top it all off, I often say things I don’t actually mean, that do not relate to my thoughts, because of the manner in which I learned speech. It became harder over the years with the movement disorder going on, which is very typical of this movement disorder. I had periods when I could not speak at all. And at this point I have virtually no usable speech, and communicate quite proficiently by keyboard. (I also lost speech when I was very little but regained some semblance of it again, and I distinctly remember regaining it before I knew what language was.)

That’s going to be different in some ways — although not all ways — than someone who has never spoken. Don’t assume it’s going to be the same, but also don’t assume it’s too different. How similar or different I am from any given person has to do with a whole lot of factors, not just our superficial outward speech history. (Personally, I relate more to people who have really struggled with receptive language. I’ve known people who never spoke or spoke very late, but who could always understand everything everyone said, and I have a harder time relating to that than to people who either do or don’t speak, but who have trouble understanding language in general, even if they can pull meaning out of it sometimes or a lot by now.)

Additionally, the way this movement disorder progresses is slowly. I remember a family member, after being out of contact for a number of years, being surprised at how much my abilities had changed. But those who’d been near me at the time had experienced this, as I did, as so gradual that, while it was sometimes perceptible, there were very few periods where anything changed rapidly:

When I was thirteen years old, I had elements of speech, movement, and understanding that cut out on me relatively rarely. Commonly enough to cause problems, commonly enough to come to a neurologist’s notice. But still rarely enough in the scheme of things. When I was fifteen years old, speech cut out often enough that an accommodation letter written at the time suggested the use of writing when speech was unavailable. When I was nineteen years old, speech cut out several times a day, and I was beginning to have serious stamina problems as well as in some circumstances balance problems. I began falling a lot when walking places, and even falling out of trees, which I had never done before in a long life of tree-climbing. I was finally given a rudimentary communication device that allowed me to type when I was unable to speak, something that had been noted since I was fourteen or fifteen years old. Sometime in my early twenties, I became nearly housebound, sometimes confined to one area of my apartment, or one single spot. It was around that time that I began using a wheelchair part-time, which made me able to be more active and mobile than I had been before. At some point, I also found that my speech had reached an all-time low, culminating in a telephone conversation in which I was only able to repeat one word over and over. I became a full-time keyboard-user past that point rather than just part-time. I now live in wheelchair-accessible housing in a cold climate with air conditioning in the summer, which has improved my ability to make my way around the apartment, and which has improved my stamina in some regards since for whatever reason I’m very prone to heat exhaustion. Now, in my late twenties, I’m using the wheelchair more (although I still walk as much as possible) and am beginning to have some degree of trouble swallowing.

I was lucky to meet people who knew what this movement disorder was, and who could recognize it in me from the outside, and point me and the professionals in my life to literature about it. It’s not the most common thing for autistic people, but it’s not as uncommon as it’s sometimes made out to be. It was common enough for there to be a session at Autreat about it the year before my first Autreat. It is common enough that I can easily name a fair amount of other people I know who have it to some degree or another, nearly all of whom end up needing to use communication devices or mobility aids at least some of the time (whether they get those things is another story).

And losing abilities during adolescence and early adulthood is, while also not in the majority, not something that can be considered rare among autistic people, either. One study put it at 17%. Another put it at somewhere around 30-38%. That’s between about 1 in 3 and 1 in 6 autistic people are going to experience a noticeable loss of skills in puberty. And, of course, the correlation between losing skills at puberty and gaining other skills has not been explored, although many autistic people who’ve experienced this have talked about it among ourselves. At any rate, these changes I have been experiencing for more than half of my life, at least have names now, even if they’re not fully understood yet. And they are, while not the most common to happen to an autistic person, not as rare as sometimes portrayed either.

And a lot of things I do just because my personality works a certain way. I’m a person, and while autism is a useful word to describe important and inseparable parts of how my brain works, those are not the only parts of how my brain or the rest of my body works or who I am as a person.

I get really nervous when people assume either that I am just like their child, or that I am totally different from their child and could never be compared. Or expect me to know everything about their children. I don’t. Some people I click with and some I don’t. I don’t think it’s possible to completely assess someone’s skills over the Internet, or to understand someone’s abilities entirely based on outward observations. I don’t think it would be responsible of me to encourage people to believe I’m exactly like their kid or totally different, but I don’t always respond to either one as often as I could, so just consider this my blanket response to all that.

At the same time, one of my strong interests is the study of the patterns that power structures take. Please don’t assume that my opinions are the same thing as how my body works. Someone could have a body that worked identical to mine but totally different opinions, or totally different from mine and have very similar opinions. Same with life experiences. When I have opinions that go beyond myself, they should not be treated as irrelevant just because they do go beyond myself. People are allowed to be Democrats and Republicans and Socialists and Libertarians and such, without being told all the time “You’re only one person and shouldn’t have opinions about other people.” I live in the world with other people so having opinions about them is inescapable, including opinions that affect disability policy and policy in general. I may be right or I might be wrong but don’t try to take away my right to have an opinion just because I’m “only one person”. It’s condescending, it puts me in a lower caste not allowed to have political opinions (and that’s what opinions about disability are, whether the person realizes they’re political or not).

Additionally, there’s a lot of things the media says about me. Some of them are true and some of them are errors caused by inferring too much about me, or by the fact that my life isn’t a nice little soundbite. Please don’t hold me to the standards of what other people say about me. I have changed a lot throughout my life and I have also learned a lot, forgotten a lot, and changed my mind a lot. People have judged me on my outward appearance as both more capable of some things than I really am (particularly when my main classification was “gifted”), and less capable (particularly when my main classification was either “developmentally disabled” or “psychotic” or both), at different times. I’m the only one who fully knows which is which because I’m the only one inside of me. At times I’ve been the only one who knew what I was really thinking behind the paragraphs I could spew out of my mouth, and the only person who knew that I was really thinking when nothing came out of my mouth at all. Other people can’t speak for that even if they want to. There are many people who have been in my presence for extended periods of time but never really known me, because the assumptions of how a person operates and what’s behind a person doing certain things happened in a certain way.

I don’t identify as profoundly, severely, moderately, or mildly autistic, nor as high, middle, or low functioning. Those are words that other people put on me. I don’t think they’re capable of being accurate. I might call myself “severely disabled” because it encompasses all of how I work (not just the parts that pertain to autism) and the degree to which I have a body and brain type that is systematically shut out of society. But just “autistic” is enough, no modifiers needed. The modifiers are put on me by the media, or by people who don’t understand that when I write things that do describe me in that way, I am making a point about how describing people that way influences stereotypes, I am not saying I conform to said stereotypes.

At any rate, if you want to get to know me as a person, stick around. But while I know many people who are like me in a lot of ways, I don’t think you can say that because I share a label with someone we’re identical, or because I don’t share one particular trait with someone that we’re vastly and incomprehensibly different. I don’t like being held responsible for the assumptions people make in this regard, and this page is one more of my attempts to stop that before it starts.

And in addition to all the other stuff, I’m also a (former) Californian (hate to admit it, but I did grow up with the weirder cultural influences of that state, up to and including bombardment with bizarre new age crap that would be considered nonsensical just about anywhere else), an artist, a (possibly bad) poet, a woman, a lesbian, a cat-lover, a mental-widget-hater, a keen observer of what’s around me, what I consider to be a freeform dancer, a former mental patient, a photographer, a baker, and a person with a deep love of humanity and the way it fits into the world in general. None of these things can be put into a nice tidy little category or forgotten just because I have other labels too.

Comments from when this was a page not a post:

  1. Philip says:

    November 17, 2007 at 11:22 am

    I like the ways you describe yourself in the final paragraph. Most especially as being a person with a deep love of humanity.

    Bizarre new age crap is not confined to California.

    Would you describe yourself as aphaisic? I don’t know if autistics who have speech difficulties can also be described as aphaisics.


  2. November 17, 2007 at 3:05 pm

    Thanks.

    I didn’t mean that it was confined to California, merely extremely prevalent in California to the point where when and where I grew up it was impossible not to get hit by a lot of ideas from it even among people who wouldn’t describe themselves as thinking that way at all.

    No, I would not describe myself as aphasic (and aphasia is not confined to speech, nor to expressive language in general). Aphasia happens from injury to certain parts of the brain after they have already otherwise developed in a typical manner. Aspects of autism that in some people resemble it, are more likely to have to do with differences in the way the brain functions overall, and I suspect that superficial resemblances are only superficial (although there can definitely be resemblances).


  3. November 19, 2007 at 3:50 am

    Personally, I relate more to people who have really struggled with receptive language. I’ve known people who never spoke or spoke very late, but who could always understand everything everyone said, and I have a harder time relating to that than to people who either do or don’t speak, but who have trouble understanding language in general, even if they can pull meaning out of it sometimes or a lot by now.

    Yeah, we feel something similar. In our case, we remember being able to understand what we were saying, even when we knew it was nonsense, but frequently not being able to understand what other people were saying or why they were saying it a lot of the time.

  4. Krista says:

    November 27, 2007 at 7:59 am

    What is a mental-widget-hater? Also, what was it like in California as opposed to other parts of the country?


  5. November 27, 2007 at 6:28 pm

    On mental widgets, see this stuff.

    On California, hard to describe in a short period of time, but basically there were a lot of very strange (and inaccurate, sometimes dangerously so) things that I was taught as fact from a lot of very “respectable” people, and while that’s true in a lot of places, the particular nature of the strange “facts” is very common in California as opposed to many other places (although there seem to be isolated spots in other places that have similar ideas, they just do tend to be more isolated and less all-pervasive).

  6. Philip says:

    December 9, 2007 at 4:13 pm

    About being a photographer. I think of photographers as being photojournalists for publications like Picture Post and Time Life, who took the great iconic photographs of the mid decades of the twentieth century.

    Until the 1970s ‘serious’ photographers recognised only pictures taken in black and white as being ‘real’ art photography. Colour was dismissed as being commercial.

    The subjects of photographs have often been people marginalised by race, poverty, disability, illness, sexuality etc. Most photographers have been white, male and able-bodied, who photograph people who are not like them; though there are several female photographers. Annie Leibovich? But I don’t know of any disabled or autistic photographers, though there must be some.

    It would be interesting to explore the extent to which photographers have had, and still have, a ‘view from above’ attitude towards their subjects.


  7. December 9, 2007 at 6:18 pm

    Larry Arnold is a photographer who’s also autistic.


  8. December  9, 2007 at 6:51 pm

    When I was still working at Gallaudet University as, among other things, a writer for its alumni magazine, I once interviewed a speech impaired student (she was hearing, but was speech impaired) who made some really beautiful artistic photography focusing on the beauty of signed language. This was some years ago. I’m not sure where she is now or whether she has continued on with her photographic artistic work.

    I imagine there must also be some professional deaf artistic photographers as well, or at least some who are amauteur. I do know there is definitely a deaf man who does professional free lance photography for Gallaudet University (used to work there full time), but more for things like graduation and so forth not artistic type.

    There (is? was? I’ve lost track) a TV, film, and photography major at Gallaudet.

  9. Sara says:

    February 9, 2008 at 6:25 pm

    Dear Amanda,

    I have only just discovered your Youtube ‘In My Language’ video clip, for which I write to thank you. To be allowed the glimpse/soundbyte in to your language is to feel ny own is two-dimensional and that you have a 3 (or 4) D system, which must feel much more precise (I think that is the word – but I only think that), or concentrated? Like poems?

    My thanks again,

    Sara

  10. Chris Jenkins says:

    February 27, 2008 at 10:24 pm

    I’m just so blown away by your entire blog. I always related autism in my head to be cut off from both verbal, and written language. I’ve been extremely incredibly wrong.

    Your writing is amazing, and communicates to me, in my language, a world entirely unseen to me before. Thank you for making the effort.


  11. February 27, 2008 at 10:38 pm

    Yeah, most autistic people actually develop oral language at some point in their lives, and even among autistic people who speak fluently (as I once at least seemed to), there’s a lot of people who do better in written language than speech, or who have speech cut out intermittently (as mine used to do) but retain written language for at least part of the time that speech has cut out.

  12. Melody says:

    February 28, 2008 at 12:52 am

    One thing about that is really interesting, though, in how many people who are supposed to know about autism who seem to not understand that someone who can speak fluently can have speech cut out intermittently. When I was diagnosed at age 10, they would say I didn’t have trouble with speech and it was nonverbal communication I had trouble with, which struck me as strange, since I used and looked at people’s body language a lot, as my dad (also on the spectrum) taught me when I was little.

    Now, in high school, they say that my only difficulties in speech are with pragmatics and nonliteral language, the latter of which I actually am pretty good at using. Then when my speech cuts out, they are at a loss and act as if it’s never happened before, even though a number of times they’ve been around when it’s happened, still expecting me to speak even when I type that it is not going to happen at that moment!

    If people don’t understand, can they at least be observant? Particularly when it is their job to work with autistic people and other people in the special services department.

    There is a funny thing about reading comprehension, which although I have a fairly large vocabulary of individual words and love to read, I tend to have trouble with understanding it until the second or third time I read something. But, somehow I scored well on reading comprehension exams, and so it was assumed I was excellent at it – though the skill I really had developed was making educated guesses as to what the answer might be based upon the wording of the question and answer choices. I tested it out recently on an SAT practice book, where I didn’t even read the reading selection, and I still scored highly. Another reason why tests and numbers have little meaning for me.

  13. Ana says:

    March 6, 2008 at 7:12 am

    @Melody:

    re: Autism ‘experts’ who don’t understand that your facility for speech isn’t constant — two possible reasons. No disrespect intended:

    1) Non-autistics assume that people’s abilities are consistent and persistent — this is what we have come to expect from a lifetime of dealing with other non-autistic people. We don’t usually lose the ability to speak clearly without having suffered brain damage.

    2) It’s very difficult for most people to ‘be observant’ when they have no idea what they’re seeing. Detachment from unhelpful presumptions in the face of entirely new stimuli often has to be learned. I remember an exercise from my freshman chemistry class in which the professor held up a beaker of clear liquid and asked us, ‘What is this?’ ‘Water,’ someone blurted out. ‘Maybe,’ said Dr. Hoeger. ‘How can we make sure?’ It was a good lesson — when seeking to understand, don’t assume you already know anything.

    I would think the only real experts on autism are autistic themselves…

  14. Cathy says:

    March 19, 2008 at 4:04 pm

    I have just found this website, while looking up autism for a project I am doing in college. I am working with a child who has just been diagnosed with autism, he is also my future nephew. I have found this website very usefull and informative. when someone is diagnosed with autism it can be very hard for the family of the child to understand and comprehend, its a very hard time for them as they are unsure about the future of their child. common stereotypes do not help the matter at all, this is the best site I have found on the matter and I am sure any parents who see this site will be helped and relieved. I will deffinetly be showing this site to my future sister in law as I berlieve it will give her hope for her sons future. I want to say thank you for this site and keep up the good work.

  15. Jennifer says:

    March 21, 2008 at 10:36 pm

    I am an autistic photographer. I mostly do artistic photography. But I did photograph an anti-war protest back in November of 2007. Some of my pictures of that protest were published in a local news paper. At some point I need to post my pictures online somewhere. For now you can see some of my pictures at http://www.cafepress.com/jenpelphoto

    As far as heat exhaustion goes. There is a guy at the Aspergers group I go to, who is sensitive to heat. He will be in shorts and a teeshirt when everyone else is in pants.

    Love your blog and videos. Keep it up

  16. Sherrie says:

    May 28, 2008 at 1:11 pm

    I just discovered your blog today by indirect way of the Wired magazine article (which led me to YouTube, then here). My discovery of the Wired article was initiated by my own reaction to my son’s exit IEP yesterday (he’s moving from an early childhood program to a program for autistic and cognitively impaired children next year). He was diagnosed as autistic at 3 (he’s 6 now). Yesterday was the first time I’ve ever had anyone tell me that they consider my son to have a ‘moderate cognitive impairment.’ This sent me on a search to figure out exactly what this label encompasses (only to find that it’s seemingly so general that any child who takes longer than “typical” to master skills could be labeled as CI, though I don’t personally agree with that). I’ve been riding a rollercoaster of emotion since it’s become increasingly clear to me that our ISD’s curriculum for autistic and CI children focuses exclusively on what they term as “life skills.” Meaning they fully intend on teaching him how to read a sign that says Exit or Restroom but no intention of teaching him reading skills that will help him enjoy literature or informational non-fiction pieces. The strict focus on gaining the skills to (in their words) live at least semi-independently feels very wrong to me…as if the educators that I’m supposed to be teaming up with think that it isn’t worth teaching *him* anything but these very basic, task oriented skills (at the very same time, our daughter who is just a year older is having a massive amount of material shoved down her throat in her 2nd grade class at a pace that makes my own head spin!). I am frustrated because it seems like my husband and I are the only one who recognize our son’s very clever problem solving and reasoning skills. Each year we keep adding these things into the IEP documentation, but I swear they (the school administration) just look at me as some overly-optimistic parent. I’m beginning to feel like we, as his parents, are the only ones who want to (as you so eloquently put it in one of your YouTube videos) learn *his* language. Nicholas is mostly non-verbal…and I can tell that it is not from a lack of things to say, but due to what appears to me to be a difficulty getting his mouth to form the words. I crave nothing more than to learn his language so I can be “let in” on all of these thoughts and emotions that I see pass over his very expressive little face daily.

    I apologize for the brain dump above. Sometimes I just need to get it out and I feel like there are very few places and people who ever understand my thoughts and feelings about these things. I get so tired of people looking at or acting toward me like they feel sorry for me because my child is autistic. I don’t want a magic wand that I can wave and strip him of his so called “austistic traits.” What would I be left with then? A totally different child than the one whom I adore right now. What I want is the magic wand that gives *me* the capacity to understand *him* better. I feel like I speak English and he speaks French and somehow I am unable to learn a second language.

    Anyhow, thank you for your videos and this blog. I now have months worth of reading to catch up on!

  17. Rachel Shekhtman says:

    April 16, 2009 at 9:14 pm

    Amanda, you rock. I don’t know how much or little we have in common, or if you think we ‘click’ or not, but you are such an awesome person and I think that in some weird ways our brains work very similarly on the inside. Insofar as you express the inside of your brain to the outside world.

Why I’m not posting much.

Standard

I haven’t really been wanting to write about this because I haven’t been wanting to deal with emotional reactions that health problems tend to bring up.

Basically, I’m in the middle of a pain crisis. This was brought on by a combination of the neck problems that I went to the ER for last July (so far they’ve found that I have a straight neck and there’s probably something pressing on a nerve somewhere some of the time), the pre-existing trigeminal neuralgia (at least that’s what they’ve started calling it at the pain clinic, it was previously considered part of my migraines), the actual migraines, and (previously) the pain from the tooth extraction, all feeding off each other and amplifying.

I’ve also had several family members with serious health problems recently, and two conference presentations, one of which was a complete surprise to me, and the other of which the schedule for was changed at the last minute (and at a conference where in addition to some really good ideas, there were some really offensive ideas being batted around that were also stressful). And other health problems they have found in me are aspirated reflux probably being the cause of my asthma getting so bad this year, and a fungal infection in my esophagus. I also had to go in for a thyroid biopsy because of something they found on the scan of my neck (and the biopsy itself contributed to the pain mess that’s been going on around here), which is probably nothing serious at all but they wanted to be sure.

I’ve had one emergency room trip (in which they said I shouldn’t be waiting so long to get into the pain clinic, after a combination of pretty strong painkillers didn’t do a whole lot), a lot of days where I could barely get out of bed, and some days where I couldn’t get out of bed, and couldn’t even communicate with people who are paid to support me, let alone anyone else.

I had my first nerve block yesterday at the pain clinic, using a combination of local anesthetic and steroid injected into the lower two branches of the trigeminal nerve. This temporarily took away pain that I’ve had for a minimum of seven years, although it didn’t take away the pain that was from the upper branch (they said the steroids might get into that nerve eventually). When sensation came back, it became really obvious that two of the biggest sources of pain for me are moving my eyes and breathing (specifically the air rushing into the right side of my nose or mouth), neither of which can exactly be stopped. It also became obvious that the entire right side of my face is in pain, but I had only previously noted the parts where the pain is worse to be in pain, because I’d gotten so used to the background of pain that I thought it was what that side of my face was supposed to feel like. It also felt like one wall slamming down between me and my body and another one between me and the rest of the world, because the pain is far more intense to feel after it’s been gone, than to get used to over a period of years. It’s really weird when having a part of your body numbed means you feel more like it’s part of your body than when it’s not numbed. I have to wait a couple weeks and then go back to the pain clinic and tell them whether the steroids have kicked in and offered any pain relief in the meantime. If they haven’t, or haven’t effectively enough, they’ll move on to some sort of Plan B that I haven’t entirely been filled in on yet.

Meanwhile, my brain has been usually (with a few breaks, or what’d be considered by me to be breaks anyway) taken up either entirely by pain or by some combination of pain and pain medication (although the medication is barely touching the worst of the pain). I’ve actually gotten some ideas of things to write about, but so far not had the chance to actually write about them. Even my doctor has been a bit alarmed because he never hears me complain about pain (he usually gets someone else dragging me in and insisting I’m in pain while I try to minimize the situation), but I was actually crying last time I talked to him.

A note to people who’ve written to me asking for things:

If I’m not doing these things, it’s not because I want to blow you off. If you imagine me sitting around having fun, the likelihood is that I’m actually lying in bed doing little to nothing at all (for those of you who might imagine that to be fun, it’s actually really boring after awhile, not to mention painful). There are many projects that I would be very excited to work on, some of which I had already started (especially during the first part of this mess where I was still thinking I could just “push through” the pain if I kept myself distracted enough), that I have been unable to work on. One of those, I was supposed to email about twenty people, all with pretty close to identical emails, and I only managed to email two, each time during a break from pain that only lasted about long enough to email them.

It’s not about me having a problem with you. If you’re one of the few I’ve managed to attempt to make some kind of compromise with, or responded to at all, you’re one of the luckier ones. If I have tried to compromise, please don’t push me further, even what I’m doing is at the moment likely pushing myself at least to my limits if not past. There’ve also been situations where a couple people wrote to me about something we were all supposed to do together, and if only one of you got a response and others didn’t, it’s because I could only write that one response. There’ve also been times where I’ve had to save any energy I had to communicate something vital to people who work for me, and have not been able to respond to people at all. If I’m responding sporadically, it’s because the pattern the combination of pain and pain treatment going on is making is sporadic itself.

At the same time, please don’t throw too much sympathy or horror or other extreme emotions at me, I won’t know what to do with it (it’s one of those emotional responses that seems appropriate to the other person but completely baffles and somewhat alarms me), and it’s the main thing that’s kept me from making a public blog entry to this effect even when able to. But then I figured people should probably know why I’ve got this enormous backlog of stuff I’m not doing, whether it’s sending you something or doing something with you or trying to problem-solve about a horrible system your friend or relative is stuck in or provide you information or work with you on a project or a project I had planned or updating my blog or anything else. Normally I deal with a lot of pain and do a lot of stuff anyway, but this isn’t my normal level of pain, it’s what happens when several kinds of pain create a nasty feedback loop. When the pain is often getting so bad I can’t tell if I’ve blacked out or not when it flares up, I really don’t think I can be sitting around holding conversations, even online ones.