I'm moving the location of this blog, both because I actually have had issues remembering the address (sad, isn't it), and to make the comments more accessible. And I changed the name to a singular (Crimson Thought, as opposed to Crimson Thoughts).

The new address is as follows; http://www.crimsonthought.blogspot.com

Well, I should be far nearer to Massachusetts than I am now. School starts tomorrow, and I was supposed to be in my room tonight. And I thought I was going to be, too.

Of course, I should have realized it snowed in Atlanta, that my flight was to Atlanta, and that flights would not be in Reno heading that direction. Of course, my flight got delayed, such that going to Massachusetts on that flight would mean missing my shuttle, leaving me (quite possibly) stranded in an airport or worse. And, of course, I had my fight re-routed.

The great thing about that, of course, was that the flight took me to Dallas, had me leave Atlanta, and arrive in Albany. Of course, if that didn't make sense, it shouldn't have; there was no obvious way to understand the teleport from Dallas to Atlanta. And, of course, we were put on another airline, which couldn't make sense of said teleport either, so we ended being referred to the original people from whom we came.

And then the lines were so long we missed that flight anyway in the counter. So when we finally arrived at the Delta counter, there was nothing to be done. In the end, it turned out that, after all, I would be in Reno another day, and that I'd be missing the first class of my next semester.

Laughing, at this point, my mother and I left the airport, only somewhat discouraged. It wasn't quite the end of the wackiness, though. As if to make things even weirder than they already were for fun, the subsequent visit to Starbucks in order to drown my headache in a hot chocolate was foiled.

If you're a Starbucks customer in differing degrees (I only go there rarely, but I know many who are daily), you might remember that the cups have a "Things People Say" (or something like that) section of text, where various (and often random) points of view are written, with the author, with varying degrees of expertise. It's usually just that, though, and not advertising.

But, amazingly, there was psuedo-advertising on the side of my cup, from none other than Bob Wright, CEO of Autism Speaks.

The message itself wasn't offensive (it was really centered on the rate of diagnosis), but the implied message wasn't as... pleasant as I might like. But what startled me most was that there was such direct PR on the side of my Starbucks cup and, worse, from a person who I tended to disagree with, to a degree of alarming regularity.

So much for not having a headache.

In the midst of all this, though, I had to note that, despite the oddness of the whole thing, it didn't really feel exceptional in a visceral way. Even though the odds of such occurrences weren't great, it seemed to fit perfectly with some of the general existence that is life, which, to be honest, defies expectations in many ways, and this was just one of many. The ordinary, it seemed at that moment, never really existed for me.

Of course, it now is snowing in flurries, with another round on the way. Reno, it seems, isn't really interested in letting me leave. And, in an odd way, that's very ordinary.

If you looked through autism news, the trial of Karen McCarron, who admitted to strangling her autistic daughter Katie, comes up often. It didn't come up here, despite my keeping up on it. Honestly, it was because, in all of the emotions and speculation, it was hard to speak with certainty about the issue. But now  that the jury is making its deliberations, I thought I would throw my hat in.

The nature of insanity, actually, is a little unclear to some degree. Insanity would usually be described as a person's inability to see right from wrong, but such a thing presumes a moral standard without contradiction, so as to make deciding certain actions unclear. There are variations on this and other trains in terms of insanity, and I'm not about to get into all of them and apply it to the case at hand. Instead, let's look at what the jury will use, which specifically follows;

A person is insane and not criminally responsible for his conduct if at the time of the conduct, as a result of mental disease or mental defect, he lacks substantial capacity to appreciate the criminality of his conduct.

That's the state statute, so I'm going to use that for now, and tinker with it a bit later, because it's interesting. Let's also assume that Karen McCarron decided it would be best for everyone that anyone  The jury isn't going to assume anything about Karen McCarron's mental state off the bat, because both sides put in contradicting psychiatrists, so that's left alone, giving us just the state of the crime itself.

The specific thing that Karen McCarron would have been considered psychotic on under that definition would be if she didn't have the capacity to appreciate the criminality of her actions. Note the act of separation in the clause. It is not that she didn't appreciate the criminality of her actions, it is that she could not  have had appreciated the said criminality.

Now, I'll have to use a little conjecture, because I'm going to assume that "could not" is not a cosmically deterministic sense (because that would get off every criminal ever to have existed, because the individual's mind would be stated as being such as it is determined the action, or the criminal's criminal mind made him commit criminal acts). And, because the action is being determined on a mentally ill basis, a strict definition that would insist on the individual's culpability is out. Thus, consider it so that the individual, at a level, judged the action rationally before committing it, such that the criminality was actively dismissed from the picture.

Under this definition, McCarron is guilty. It well could have gone through her mind, and she actively made the decision to murder based on another moral judgement (that her daughter's life was best existing as... not existing)  There isn't a reaction per se, but action based on stress and rationality. She well had the capacity to choose otherwise, given her rationality, which was actively used and not supresed in a real way. 

Interestingly, however, I've seen a few people analyze the situation while dropping the imporant distance of this clause, leaving roughtly this, if I was to amend the statute temporarily (though I wouldn't);

A person is insane and not criminally responsible for his conduct if at the time of the conduct, as a result of mental disease or mental defect, he does not appreciate the criminality of his conduct.

Here, I was a little hard pressed to say one way or the other. And here's why; McCarron's mindset was not on the criminality of the conduct. It was on the moral value of the daughter's life. It should be noted that the notion of murder as a moral crime should be taken out her  takes a step out of anyone's real moral authority to say either way;you could create an absolute, but then you're taking out even sketchier circumstances like euthanasia. And that's irrelevant, as it's more about the criminality.

But two things here would allow me to say that McCarron is still guilty. First, even if her rationality didn't decide based on rationality, that's not to say she didn't understand that while undertaking the action. It just meant that the criminality was a non-factor, and that she didn't care about it. She appreciated it, or understood it, but didn't care to make a decision based on it.

The other is that McCarron would have to have made the action based off of a specific defect. Any kind of moral rationality difference assumes a distinct morality, again, for each and every circumstance, and no such thing exists per se. There is nothing specific to McCarron, something distinct and separate from the rest of her mind, that would drive that action.

Now, the jury is going to consider the following pleas; guilty, guilty but mentally ill, not guilty by reason of insanity, and not guilty. The last bit is out of the picture. I would dismiss not guilty by reason of insanity, but it may be that she is mentally ill, not such to be considered insanity under the statute, but otherwise so. I'll be interested to see how that comes out.

Well, the flow of posts has dramatically stopped recently because I was on a self-imposed gag order. The reason for this being, actually, that my Mom just announced her bid for a Nevada Supreme Court seat, so I didn't want to so much as hint at that, so I stopped all of my online means of communication. I usually would trust myself on such an issue, but I found myself thinking about it a lot (I spent years telling her she should be on the Supreme Court, but she actually bid for different conspiring circumstances, rather than anything I said).

Of course, this all comes before our trip to Disneyland, so I'll be off tomorrow having fun in California at the Happiest Place on Earth by tomorrow, to return by Monday (though I may get a post in Sunday). And this... no, that wasn't what I was going to write before I go off to Disneyland. And I'm not even going to get into the new study that, by using largely the power of common sense, showed that mercury is not related to autism (others have, and I may well later. But I don't feel like broaching the subject now).

Instead, I'm going to mention something about motor skills, sports, and those related autism issues. It's something that's still pressing, but far less so than when I was younger, in my day to day life. It's not a really traumatic issue, but it is one in and of itself.

I had some rather severe fine motor issues. The issue was clearly something that was physical in addition to mental (as demonstrated so profoundly by my occupational therapist when she pulled by middle finger well past my wrist), but whether it started physical is another issue (the lack of using my hands as normal in the first place well could have created the physical issues without them being present before). I did do some significant occupational therapy, much of it I can remember (and in particular the taxi game, in which the individual uses their fingers to guide a taxi around a dorky town, but it required some force to actually move the taxi. It's ingrained so much in my memory I actually shuddered thinking of it).

Even so, it was a gargantuan school problem; I didn't have the motor skills to write. It was a serious educational put-off, because if I had a chance of understanding fully what the teacher wanted and did it, the teacher wouldn't be able to read my handwriting. In fact, it's only a development in the last two years or so that my handwriting has been considered legible at all, and it's still difficult and large. And there's no way I could write cursive, and because I could never begin to write it I can't efficiently read it, either (my signature, for this reason, is hilarious, because I am actually mimicking something that I remember as being something like my name written in cursive, but it's dubious).

Otherwise, I had some issues. However, when I was seven I began to take martial arts in both classes and independently (because martial arts I actually wanted to take were not near me), and in the process I began to gain enough other skills to be a decent soccer player, and even was a fast runner (though I never could actually be a runner per se, because I will never perform without some motivation, and running on a track of any kind does NOT provide motivation).

In many ways, martial arts training was far more helpful generally than any sport (on principle, I wouldn't consider martial arts a sport). The motions were broader, more complex, required more balance and whole-body work, rather than any other sport. It also was good that it also happened to be my favorite of all of the physical activities I did, though after that events conspired against me (the classes I was taking frustrated me by singling me out often as inferior due to largely social reasons, and though I did have a good run at a jujutsu/ninjutsu before I went to school, I otherwise couldn't find anything that I liked to take in Reno, which was filled with many martial arts that weren't suited to me (because I know a lot about martial arts, I was picky about my choices, and of course my favorite is taught only in very specific locations that, for obvious reasons, didn't include Reno, NV)).

From all of that, I could probably emphasize a few things in terms of teaching autistics motor skills. As so far as the skill abilities go, the actual exercises that would deal with coordination are specific (much in the same way that being a good runner does not teach one how to use a bike, though far more specific here). It's not total, though, there is some carry over. But it has to include a wide variety of different motions all fairly well balanced. Otherwise, there will be gains in some very specific areas but otherwise with little improvement.

I might want to draw attention to something that I noted earlier though; it's not clear to me that the fine motor skills were anything that, in introduction, were anything other than mental. In being seperated from the way other people hold themselves by means of innuendo (common in non-autistic children), an individual is not necessarily given an impulse to hold themselves any other way, and thus the body doesn't cooperate quite the same way from an early age and onwards, causing both a lack of given skill and strength. I'd have to think about other aspects which might be tied to this, but it'd take some thought to really consider it.

Anyway, I would just end on noting that such issues, while not the primary importance of autism communication (I've seemed to have gotten off fine in this day and age without the ability to write), is something that should be addressed and considered per the individual child and his strengths and weaknesses in such areas. Of course, remember that these activities have some of the same draws as they do for other children, so listening to said child is imporant too (I don't want to be advocating for forcing children into strict fitness routines).

I received earlier today, interestingly enough, given the other notes of the day, an e-mail requesting information regarding the CAA.

I sent it on (and forgot to mention who I generally was, and then made a few typos; I was multitasking a little too much at that point) to the relevant people, but I also decided to put it up, as imperfect as it was, here. So, it asked for my opinions on what I thought was high priority research questions in the following areas; 1.Treatment, 2.Diagnosis, 3.Risk Factors, 4.Biology, 5.Other. I answered accordingly, so here we go...

1. Regarding the treatment of ASD, the by far most important factor to be considered is the educational area, which includes the behavioral therapies such as ABA, and complimentary therapies that would work with the educational and the behavioral. Research that would lead to improvements in such practices, and potentially limit the number of hours needed so that more can get such practices in the first place, would be the most helpful of all kinds of research possible. Research that specifically focused on the learning differences and similarities of ASD individuals would be extremely helpful as well.
   

 

2. Diagnosis is a factor which is secondary to the educational aspects, but there is still value in researching the ASD phenotype. In particular, a more complete understanding of the AS spectrum is needed. There is also an incomplete understanding of the AS spectrum in its mental implications rather than in its behavioral implications, which are often disregarded (as the behavioral aspects are the most obvious factors). Also worth looking into is the status of individuals who are considered “lower-functioning”, who then gain certain skills and are reassigned to a different place on the spectrum, sometimes losing the diagnosis altogether. There may not be enough of a population to conduct such research, but if there were it would be important.

 

3. Risk factors aren’t the most important aspect of ASD research. The research itself doesn’t help the ASD individual or his family in any guaranteed way and with limited resources at hand there are far more pressing matters at hand, such as effective education for ASD individuals. If such studies are to be directed, the most helpful considerations would be centered on the possibility of genetic factors, rather than environmental factors.

 

4. Biology is another aspect of research which has limited pressing importance for autistic individuals. While research on the neurology of ASD may be helpful in so far as they enhance the education of ASD individuals, they otherwise have a limited function. On the other hand, an honest investigation of some of the biomedical treatments is necessary, in terms of overall safety and efficiency, though focus should be limited to the more widespread practices (as there are too many to address individually). Also, while not really a biological study, it would good to have an investigation into the intelligence of autistic individuals, noting the potent difference between the ability to express oneself intelligently and intelligence itself, which often have been confused in previous research.

5. There are a few factors which should be considered while conducting research. There should be an effort to include ASD individuals into the process, who have a unique insight into the condition. There has also been an issue of certain misunderstandings causing significant stigma for ASD individuals. It is also important to consider looking into the safety and ethics of all kinds of treatments, as some of them are quite potentially dangerous and yet are still in frequent use.

The Reno Gazette-Journal published a bit about autism. Particularly, it noted the lack of government support, and the inability for families to get funding. I actually happened to be involved in that process, so I thought I might mention a few things on that, well, the articles didn't mention.

Autism for Nevada has typically been an issue that is considered unfortunate but unwieldy. After all, it is Nevada, and the very mention of taxes scares half the population away. So that's a typical issue. Then two sessions ago a bill was passed that mandated all education bills be put through before anything else (Democratic majority, tax threats aside), which ended up having everyone cramming even more than usual into the last hours. In other words, a mess in terms of funding.

It also happened to be the year that the Autism Coalition of Nevada was formed, which basically united all of the autism groups from the state. Previously, there hadn't been a strong enough singular effort to get anything done efficiently, so there were consistent failures up to that point. It really did make a difference; Ralph Toddre, who runs a local news organization, headed up the job well, and the Governor's office, mostly through the Governor's wife, Dawn Gibbons, became involved as well. There were also a number of professionals from Las Vegas who flew up from there to Carson City, including an autism mother (what a position to be in).

Some relatively short time after was when, by chance, I was found. Finding the bottom line (funding for education for those who really did get so much out of it) more important than my education (hey, I passed), I worked with everybody on that session. Though I did a few other things, I primarily was utilized to show the effectiveness and importance of ABA. There were a few glitches (when you unite a whole group of people with different motivations, that's bound to happen, and now I somewhat regret the way I tailored the argument, effectiveness aside, as it was misunderstood at some level), but in the end I did my part, and everyone else did what they could.

Mind you, it has to be realized that the only funding we could even potentially get was in the number of 6.4 million, as the budget was strained to extreme points, and in the end it was a lower number (though I can't remember exactly what). That's not much to deal with in terms of ABA funding.  In the end, the number that were going to be given any proper intervention was below 100, and that wasn't exactly what was going to be as much as some would hope. Mind you, we took what we could get (I was up at the legislature until the bill was passed, at 11:30 pm or so before finals. Believe me, there were people fighting for that money).

I suppose the article was disturbing in some senses as it really did underplay the effort that had taken place for all involved. It really isn't that the government or the advocacy groups don't care, it's just that everyone is extremely stretched at this point. Despite some reports, I've had personal knowledge that the Governor does not plan to cut autism funding. I've had to many personal conversations to believe the contrary, and this is coming from one who admittedly does not agree with all of the governor's policies.

In any event, I think that, as the article notes, there is still a need for such funding, and a need that must be met. But it shouldn't be to ignore the efforts in place.

I just came back this afternoon from Sacramento, where I was on a brief tri. During that time, I managed to finish Jenny McCarthy's Louder than Words. Now, I had posted about such matters prior (on my very first post), and others have more frequently. But I was going off of public statement, and they have gotten more attention than the book itself, so I thought I would write more extensively here.

To start, the writing itself is fairly simplistic (as to be expected), with not a lot of comprehensive self-examination. There is some limited amount of introspection, but it isn't much asides from expressing fear and a passage about the meaninglessness of sex during the process of helping her son. It's direct to her thoughts, which is definitively a two-edged sword here (think excessive ad hominem). But, that aside, let's get more directly into the content.

First, I appreciate the fear that McCarthy describes, especially if you are extremely unaware of autism (in any real way); the mysterious is scary, and especially when there is something different, seemingly wrong by not in my eyes not really (not that there isn't a lack of skill), about the child. That's frightening, and so I'm forgiving as she is being a complete jerk to medical professionals of all kinds in the process (and really a jerk, but it's fine). So I understood a lot of that. There's also a lot of personal stuff that is just that, though some of it was alien to me (Hollywood culture has never been a focus of mine, and there's some of that. She is an actress, after all).

What got to me (and others) quickly, though, is that she attributes autism to several things at once. She notes signs throughout Evan's (her son) life  prior to an event, then talks about the seizure he had as causing it, and then goes onto vaccines. Looking back (though I can think how she might have the times connected), she didn't make it clear exactly how it all connected. It's a sore spot for those trying to find what her theory is (though you can understand vaccines are involved, and the seizures, and that he had aspects before either, if she's consistent).

Her suggested treatments are no less varied. You'd come to the belief quickly that autism was more of a series of random events, rather than a single disorder, reading through this. Now, while that may be true in smaller part, the sheer amount of chemicals that could potentially go through a kid's body as suggested throughout is scary. It's almost a list of all things that could be done, without much pros and cons (well, no cons, anyway).

She attributes the large majority of Evan's recovery to the various treatments she used. It's very clear, however, that she went through the whole ABA process (which, alone, did me wonders), and that's when he gained more skills. I suppose it's easy to suggest that X item changed things rather than Y process, but it leads one to wonder if she really thought over the timeline at all (not to mention she said she found info in 2004 that came out in 2006, so something around those times). It's a sore point for me in particular (because I know that, indeed, ABA does work alone). Evan was different than me (he had seizures, and while I have a slightly epileptic brainwave I only get seizure-like migraines, and he had a mysterious immunodeficiency disorder (though I'm skeptical here; it's supposedly like that of an AIDS patient, but he does well enough with the colds that he does get. The increased number she cites makes sense to me outside of that (he had been out of school for a while at this point in time))).

Interestingly, however, we also share some similarities in the "previous" behavior (previous for him; I had no such event as a seizure). Many of the similar distance, the lack of attention. She even notes she thought him to be intelligent without the social behavior as expected (as my mother did, though I tested to 60 at the time). It makes me wonder even more about that issue in my head for such "recovered" autistics, as she claims he is at this point; how is he going to feel about this later? I was under the same pressure, expected to be normal. Apparently, that didn't go so well. While we made a better than extremely poor transition to understanding me as a fundamentally different individual, my parents hadn't literally advertised the fact, as well as giving all kinds of reasons as to the direct cause and how I was cured. That will probably, simply put, be a poor position for him to be in. I think he'll be frustrated by that. He'll be fine personally, for the most part, but still different. And, reading this, that will be hard to get into universal consent (assuming Jenny doesn't get him to believe it all, which for me would lead to conflicted identity (it did for a bit).

That leads me to the sorest point in the book; I am extremely disappointed in Jenny's doctor, Dr. Kartzinel. It's sad, what he's expecting people to believe. That autism is "a journey into faith, hope, love, and recovery", when it "steals the soul from a child" and "sucks life's marrow out of the family members, one by one". A crisis of Hell, in which one finds faith in various chemicals? Not to mention it's just bad, portraying autistics as kidnapped (a very bad claim, as recently made by BBDO and NYU Child's Center, though it was called off last week for offending "patient groups" (way to marginalize people!).

She also provides a guide for parents trying to figure out what to do. I had to sigh here. It's a laundry load of treatments and directions that would have a person driving all over town (not good for a parent trying to save what little money they have). There's a good deal of ones that I disagree with in principle, though some are just curious incidental manners. For example, she mentions autistics tend to have issues with depth perception as a whole. I would heartily disagree with that as a blanket statement, as I tested the same, but it was actually a focus difference, not anything to do with my vision.

In the end, there are many faults to find. While maintaining sympathy, it's simply a little hard to read for those parts (oh, and I didn't get into Crystal and Indigos, which she cites. Look into that, and you'll understand what I mean). It's also not the ideal message to be reaching the whole world. In the end, though, it is what it is, and that sympathy should never be forgotten, how many misunderstandings are being promoted accidentally).

Well, I suppose I should start by wishing all a very Merry Christmas. It's been a good day for me (in more than one way). So, given the day, I thought a little about Christmas.

I would admit, I don't happen to be one of those who thinks about Christmas in religious terms. It's always been special for me on an emotional level (this might have gone without saying, but since I've had to defend the point that autistics have emotions with which that is possible, I suppose I will). For me, there's many reasons why, and less so for the material gains. Well, that's not to say I'm don't like those parts as well (a sum of money to a martial arts store for me is heaven. It took me less than 5 minutes to get what I wanted), but it's not my primary thought.

My mother is a tradition person more than most, and so frequently we're doing similar things year to year. Sometime during the season we do gingerbread houses, cookies, and every year we've gone to a party with some family friends (where we have to sing, which is both interesting and a shame, because that entire family can sing and we, well, can't. If it was just them, they would sound nothing short of incredible, but they include us every year). That gives me comfort, in and of itself. I know I take more comfort in that than most of my family, even if the activities are something I otherwise wouldn't be caught dead doing.

The trading of gifts in and of itself is fun. We usually do trade gifts at an early hour, like six or so, but today it was more like eight because everyone was up late last night doing gingerbread houses. I particularly like the unexpected gifts, yet very much my own type, more than the ones I asked for (I have to think about what that was this year, though there are many candidates).

Finally, I suppose it is the time of season where everyone is generally happier than usual. I can't say that we are universally happy (hey, it's just not people without some conflict here and there), but it is generally a more lighthearted time. There can't be anything wrong with that, can there?

So, thinking about all of that, it's interesting to compare it to the traditional considerations of autism, and if I was to be taken stereotypically (ok, it's hard for me to be taken as stereotypically autistic if you are used to the typical public image, but if that's getting to you try typical Asperger's as a guide). There's both an aspect of Christmas that comes with the expected and the unexpected, and I enjoy them both a lot. So long as the time feels safe (not a given, I know), the unexpected (which isn't typically considered a good thing when talking about autistic people) can be just as great as the expected.

It's typical to think that people who are autistic have an obsessive need for sameness or security (depending on who you are asking). Now, it's true that there is a need, but it's not for sameness, and not for obsessive security. When the world is as open to a person as it is to an autistic (some would say overstimulated, but when the person is perceiving more of the world than otherwise, such a statement is unclear), there is a need not to have to observe and be surprised by everything, which entails that need. But once that person can find a way to establish that zone of comfort and to expand it, there's no reason to assume that the person can't enjoy the pleasantly unexpected.

After all, the holidays are for everyone!

There is a very certain perceptions of stims related to autism; the rocking, the spinning, even the injury. It's typically associated as one of the "banes" of autism, one of those horrible things (they are one of the more physically recognizable details of autism, regardless). There's a pretty good idea of what stimming does (calms the person). But it's also interesting how exclusively we see it.

At this point in life, I don't really rock, spin, or any of the classical stims. I do have a tendency to pick at the skin, which is unfortunante but it's become something of habitual relief and I'm trying to replace it. But it's one of many others. My best is a trampoline I have at my proper house, which I do use frequently.

But, outside of me, it's interesting that people will notice such behaviors in autistics, but yet never to recognize such behaviors as such in themselves. Ever wonder where nail-biting came from? Foot-tapping? I'm sure other similar behaviors will come to mind, so I don't need to run through a list. But all of those are actually stims in the same way someone rocking is.

Now, there aren't exactly anywhere near each other in degree (I'll feel the effect far more if I'm rocking than if I'm tapping my foot). There's an individual cap for each person to have that effect from the stimulation, and for autistics the bar tends to be higher (one of the many ways I am very notably autistic). But, in principle, they are still very much the same action.

There's also the practical issue of rearranging stims; it's not exactly in the best interest of a person to be self-injurous, for the statement of the obvious. Stim rearrangment has kind of been practiced a lot by non-autistics, usually under the terms of removing bad habits. And ABA does deal with many of these points, and with a lot of success. But it also (unlike the general rearrangment) fails to replace it effectively.

I've kind of been trying to find a suitable, useful stim, and I've actually not had a lot of luck. The ones that are effective per se are usually location-specific, and otherwise they are effective but socially not great. Trying to find one that works for all situations would be great for me, and I'm certainly open to suggestions. Otherwise, I'll be on my trampoline.

Well, I just finished my Chinese final, which really has been the majority of my finals study. It's also been the majority of the time of all of my classes. Heck, it's been most of my time the past few months, which I'm not looking back on as a completely healthy thing. So I've decided to look back on what was a considerable amount of time of my life, an amount of time I probably hadn't spent on a single educational task since ABA.

First thing, it was freeing, beforehand, that I generally had understood that effort did not mean grade, because I would have sorely disappointed myself in this regard. The second half has been harder than the first, and I hope I got a C (some standards, at least). You'd hope six hours a day would have earned me that (usually spent studying things I should have learned the first time around and really didn't, the issue of having an incredibly low retention rate in a subject that's cumulative. From a school-related perspective, I really wish I had been bad at a non-cumulative subject, and then I would have actually had time to live). If there hadn't been that general understanding, I would have been way too upset.

Second, it brings up the point regarding school in general; people really do learn at very different paces and in very different ways. I was taught in a way and at a pace which I really couldn't compete at an acceptable level (couldn't, I think, is the operative word here). That's not to criticize anyone (except, perhaps, myself), but even at a college level this mistake, made often out of necessity, is pretty common, and yet frequently unrecognized. I know where it has been, and have been thankful for that, but I'm also aware of where it isn't.

Do I think I can learn Chinese? Actually, yes. But I think it has to be in a way far more individual to the way I have to learn language. If ABA is any indication (and, to some degree, Latin, though I had to cut corners. What I did learn was the same way, though), I have to be directly introduced to the linguistic "system", for lack of better terms, rather than using vocabulary and hoping I pick up on the system like everyone else.

Finally, I'm glad on the whole I did take it. Perhaps not for the work, but I still learned a few interesting things, and it did remind me about people and their strengths and weaknesses (I can say strengths, thankfully, from my other grades). As an added bonus, I remembered as much the positives of autism as the negatives; there was a good deal of the typical teenage male banter that I find amusing in a distant way (as in "How the heck does he find that funny?").

But I'll be very glad to have some time, come the end of the week, to simply be sitting around on my butt doing absolutely nothing, without a single flashcard or textbook in sight.

I, admittedly, have been rather busy doing various studying for finals (tomorrow and the day after), but I finally found some time to write around, so here I am.

Today I was looking through some news reports, and today one comes up about the CASK (or a lack thereof, more specifically) causing autism. And I just kind of rolled my eyes. I'm pretty sure I'm not the only one to have rolled my eyes, too.

It's got nothing to do with CASK proteins, however.

It's something more of an issue with how many different times that I've read "X causes (or linked to) autism." The frequency astounds me. It's so often it is hard to distinguish whether it's even worth reading. And it's really too bad, because an awful lot of it turns out to be nothing at the end of the day.

For me, a lot of it is particularly useless because I received one thing (an intense education program known otherwise as ABA) that worked. And I was classically autistic, without a doubt. So it probably seems even stranger to me that there is an attempt to go after every and any kind of "treatment" (many of which, in truth, are dangerous, such as chelation). It'd almost seem appropriate if medical appointments were supposed to be in terms of ice cream, with various flavors for the months, but what works for ice cream really doesn't work for assisting people. What's more, it probably would get to an autistic anyway, who wouldn't appreciate the randomized scheduling.

Now, to some degree, it's admittedly a tough road to justify anyway, because of the ethics involved (and, as a whole, it's even debatable whether autism can be cured, as it is based on a comparative diagnosis). But even in terms of helping some of the negatives, you begin to wonder whether the money really is spent correctly. I mean, there are some definitive services in the way of autism which aren't there which we don't really need to research, and rather than a definitive help.

To some degree, it's part of the general problem with research, because there is never any real assurance that you will get something in return in any definitive sense. But ir's particularly of interest when there's a lot of people who really might need those funds. In any event, you'd hope there'd be equal funding at least for what we know works. Sadly, I don't even think that's true.

I've been admittedly looking forward to my winter break (I'm off for a full month, which is astounding enough on its own, and moreso considering the breaks I've generally been getting), which is coming up pretty soon. You'd expect it'd be for a more typical reason (and part of it is; I like Christmas a lot, and the family (sister included, I'm so happy) is heading to Disneyland in January for my brother's birthday). But some of it really is something so simple, so strange, that it's even caught me by surprise.

I am looking forward to, no, longing for a good Pad Thai.

It's not a pure physical addiction, certainly (if I had withdrawal symptoms, I missed them, and I haven't had it regularly at all since I went to school). But I've been thinking about it quite a bit, all considered. I've even looked on websites with Pad Thai recipes, despite the glaring fact that I don't really have a proper kitchen to cook such a thing with.

I used to have Pad Thai a lot more than I do now. There's a restaurant near to my house (an hour's walk or so; I don't drive) called the Green Papaya. I remember when I was twelve or so that I, comically enough, didn't want to go to a Thai restaurant. Even though I absolutely loved (and love) the Chinese cuisine, I had reservations about "spicier food", probably coming from experience.

Of course, I managed to be convinced by a particularly good article in a free paper, tried it at a different location, and eventually made it to the place next to my house, where it was even better. Now, one of my (if not my) favorite food of all time. The Green Papaya soon became a regular hangout for me; I'd walk up there to collect my thoughts and to have food which had a wonderful quality (and wasn't terribly expensive, though not cheap). Even when I came back for fall, it didn't failed me (as I had expected it to; sometimes when you dwell on such things the actual result underwhelms, but not here).

So why the obsession, I asked myself earlier today? Why think about food so much (to a degree unlike one that weighs at 125 or so)?

Then I remembered what I was talking about. In addition to being amongst the best foods ever, it held something nostalgic for me, something of the previous two years, and a good degree of intellectual thought. Many of my better essays and ideas have come to being over that noodle dish, and with the flavor comes an association of safety, but also of achievement, a physical memory of things I did right. The feeling that comes as a whole, from the combination of physical and mental, of the full engagement of my person, is something that feels, well, above.

Which made me laugh a little. People spend their lives looking for spiritual moments, of something beyond, above. Some people try to find something in a divine sense, other in communicating something, of transcending medium. The methods and the goals seem endless as they are ambitious.

And, yet, I have a piece of that in a little noodle dish, one I'm looking forward to come Christmas or so.

I have to admit, I'm not usually the one to write letters regarding current events. I did find, however, that the recent "Ransom Notes" campaign was important enough to stop that even a small letter of opposition would be worth it. I sent about four today, and I've decided to reprint the letter here for your consideration.

Dear (insert relevant party),

                I am writing in regards to the recent “Ransom Notes” media campaign. I understand that the intentions behind the campaign were good, and that it was meant to bring help to those with disabilities. However, I found that the campaign both creates the wrong sort of awareness, that which will cause panic at the expense of a rational discussion, and demeans and belittles those with disabilities. As such, I urge you to pull all of the advertising of the “Ransom Notes” campaign and issue a public apology.

                I speak in this matter from personal experience; I am an autistic college student. I had the classic diagnosis, until I exhibited enough skills to lose the label. It should be well noted, however, that I am still autistic, and identify with that mindset.

                Thus, I was personally offended by the notion that I am somehow held down by who I am. Autism is nowhere near as simple as something which destroys social ability or the ability to be self-sustained. It is also factor into the way I think and feel about the world, a way in which I am very comfortable and happy with.

                Further, I disagree with the totality of these statements. As far as I can tell, and as far as I have been told, I have a more than adequate social skills. Further, I left for college earlier this year, two years earlier than expected (by expected, I am referring to regular notions; I recently turned seventeen). To suggest I don’t have, and wouldn’t have had, the ability to take care of myself is to deny the existence of those like myself.

                I also recognize that this isn’t always the case, and that sometimes it is necessary to teach various social and practical skills in certain ways to autistics. However, it requires just that, a different method and mindset to educating an individual, to prepare that individual to be self-sufficient, and to live in a way in which the individual is successful as that individual or, more to the point, as an autistic. Creating messages that involve a “kidnapper”, ones that create fear but have no clear meaning, draws attention away from that, from what the individuals you wish to help really do need, to a vague enemy which really shouldn’t be an enemy at all.

                I understand that these messages were only meant to make people become more aware of autism, and drive them to become socially active in regards to autism. However, such messages, while they do just that, create awareness in ways which only sustains simplistic, adversarial images of an aspect of real people, an aspect which is worthy and important in the lives of those individuals. The “kidnapped soul” image, as you have presented it, creates a stigma of autistics, such as myself, that it makes it difficult for autistics to be honest and forthright about autism.

                Further, such images are dangerous in and of themselves; to state that an individual is taken away, and thus no longer is present in a recognizable state, effectively denies that person humanity, and those who show more traditional humanistic qualities are accused of lying, of being traitorous, and of being arrogant. I have personally been threatened and scoffed at by individuals whose entire perception of autism rests in these advertisements.

                Considering these details, I would suggest that you remove all ads related to the “Ransom Notes” campaign, or potentially harm the lives of autistic individuals. I would encourage that, next time such an advertisement campaign is created, that the individuals of which you are speaking and their opinions are considered. As it stands, this campaign may significantly harm individuals with disabilities, which, at the end of the day, does no one any good.

                Thank you for reading this letter through.

                Regards,

                Cliff Schumacher

Some unsettling news today; The NYU Child Center is getting some new advertising out there. Called the "Ransom Notes" project, the intention is to cause panic basically in order to secure more research into mental disabilities. Not that I agree with the goal, but it's not shocking.

What is shocking, on the other hand, is the way in which it's being advertised (specifically by BBDO, which is doing the work pro bono). Here's what the advertisment, made to look like, well, a ransom note, says about autism.

And Asperger's


There were others (all offensive), but since autism is my particular note here, I'll focus on it.

First, whoever was holding me ransom in these notes really messed up. I can take care of myself, and I can interact socially. Frankly, these kind of ultimatums, in a means to scare, aren't even true always.

And they represent the very worst of a very complicated picture. How about the intelligence that comes with (yes, comes with) Asperger's? How about the unique perspective granted by autism? Why focus solely on the negatives of social interaction, even if there are positives? For example, Asperger's individuals are known to have the lack of social filter, and thus can be very direct and to the point. And if the literary critics and stylists I've read recently (I have Joeseph Williams on my shelf, Ten Lessons in Clarity and Grace. He very much supports that), it's an extremely valuable resource. Heck, it might even be better communication.

At a minimum, it is insensitive to say such things, anyway. How pleased am I to learn that I have a ransom note written in my name? I can't say I'm thrilled, especially since, if I'm captivity, I totally missed the point. I could say I have been locked away from social interaction in degree, but no more than a regular person is locked into certain types of thoughts. And if you're locked away from something, it seems that you can be given something as well; my social distance has given me a perspective that, frankly, I like.

And, yes, I'm offended. I prefer not to be a victim of something I like about myself. If I am a victim, it's certainly not to autism. Indeed, when thinking about being a victim the perpetrators seem more to be BBDO and NYU Child Center.

In any event, since I'm apparently being held ransom, I might as well direct the extortion that's supposed to be going on. So, contact the following;

The NYU Child Study Center
577 First Avenue
New York, NY 10016
Rubenstein Associates, Inc.
Public Relations
Contact: Nadine Woloshin 212-843-8041

Write about your disgust with such blatant fear-mongering tactics (and mine, though I'll be writing about that, too). Put into perspective the damage these statements cause. Outright condemn, if need be.

Maybe if you do, I, and every other autistic on the planet, will be no longer subjected to this kind of harassment and defamation.

Up in Great Barrington, where I'm in school, it snowed. It also rained, hailed, and who knows what other weather effects, but I do know that it snowed.

Inconsequential? Perhaps it might have been only be noteworthy for the beginning of winter, and for the first time there actually seems to be a reason why December is associated with snow (in Reno, it does snow, but it's erratic). But, for me, it was a whole lot more.

There's always been something about rain and snow, the feeling of little things falling resting on you, reminding you both at once of yourself and of it. The experience could be too intense; I used to dislike showers when I was smaller, and probably only allowed myself to start taking them out of necessity (now, it's not that bad). But if there was a light snowfall or rain, I always loved being outside in it, encased in sensory experience, and loving it.

When our family would go up to Donner Lake,and it'd snow, I'd always take time to be outside. I'd be outside, walking around, reaching out, looking up. The full feeling, that of being open to everything, it was something I enjoyed so much.

I particularly remember when I was seven, which was a year of many things for me, and one of the noteables was that Donner had a significant snow that year. The house we lived in up there was virtualy encased when we got there, and you could walk up to the top of a phone pole by walking on the snow. I, loving the feeling of the fast-falling snow, went up to the top of the hill, up to where the phone pole was, and took off my jacket, under which was only a short-sleeved T-shirt. At that moment, it was me and the snow, each embracing the other, each unrelenting. Unfortunently, my somewhat spiritual moment was quashed when I lost footing and fell into the snow a few feet, and needed to be saved by my friend.

Another time (I had to have been about 10), I walked down the streets of that Donner neighborhood with my dad, as the snow fell. It was probably amongst the first times my father had a completely candid and direct conversation with me about his life, past and current, and was memorable for that. But as memorable was the feeling of snow, gracefully falling across my face, reflected only by moonlight.

And, so, as last night's snow began to fall, I put on a sweatshirt, and walked outside to look at the falling snow. After about five mintues, I took off the sweatshirt. And with every little snowflake that touched my body, many little memories came with them. 

I was looking at Autism Vox (for those who might not know, Kristina Chew's excellent blog on autism and her son, Charlie) today, and came across this post. It was a particularly interesting post for me, because at a time not really all that long ago (and yet not so soon; is a decade all that long or short?) I very much fit that description. The parents of their autistic son defined recovery as followed (though casually):  A child is now able to attend school in the same grade as his same-aged peers—without an aide or any special services; his academic skills are at grade level or above; he plays video games. By at least first grade, I had no aide, and academically I was grade level (though not indicative of my intelligence). And, boy, did I play video games.

But I hardly  would have considered that recovery, and said so. I was and am still autistic, and though eventually I was indistinguishable in first grade this wasn't so, and it was, indeed, indicative of a different mindset. Much of these issues are still present, but concealed. For example, when I was that age I would be incredibly angry whenever I was unable to do something, or some how didn't do something right. Even now, with an additional factor of a good memory, I still have issues living down things I did, as early as that age, and recall them with a significant degree of embarrassment. This level of focus and attention, with the inability to simply "move on", is one of those many way I'm autistic.

The point is, autism isn't exactly something that disappears when certain skills are gained. They may seemingly manifest differently, but the structures, with the same benefits and drawbacks, still exist, and almost certainly will forever. In order to really understand the person, simply dismissing autism, even if considering "residual elements", is taking a large step back in the understanding of that person.

So you might imagine that I was a little displeased to find this comment directly under my own.

I’m the father of a non-verbal, classically autistic 10 year old girl whose progress has been agonizingly slow.

Your article seems to be saying two things. First that biomedical interventions have not been responsible for the improvements seen. That I believe to be true. ABMD s a lot of snake oil.

You go on however to denigrate the progress made, focusing on the fact the child is still autistic. Instead why not celebrate the progress made?

Nearly everyone with a low-functioning child with a much delayed mental development would love to see their children get to the point where their children’s autism was manifested by a quirky personality.

Now, I understand why this position comes up. Although I disagree with his interpretation of Kristina's post (she was much more stating how that progress didn't constitute a "recovery"), it wasn't that point that got to me so much. And, further, I understand the frustrations of a family who has an autistic who, for the distance socially created because of autism, isn't getting the education and skill we'd want him/her to have.

But I prefer not having a rather important and worthy aspect of my mind marginalized into "a quirky personality". I attribute many things to autism, and for me they are both positive and negative, and I wouldn't trade it for the world. Autism, I have and will argue, fosters intelligence, forms a direct relationship with the physical world, and allows for a will to be created outside of societal norms. It also comes with plenty of negatives (I can tell you, if it needed be said, that not being able to live down things you did when you were seven is a real burden, especially if no closure comes, which happens a lot in life), but I have chosen gladly to accept them in order to gain the benefits of who I am. I'm comfortable with that at this point.

And, yet, a whole aspect of a comprehensive experience is dismissed here as a quirky personality. Sure, I have a quirky personality. And yet there's far more involved. It's such a simple caricature that it reminds me of the most simple of stereotypes.  Even if there is truth to the statement, the clear lack of understanding shown in that statement is unfortunate, if anything else.

I don't mean to demean, but to point out that such statements, in all of their positive intentions, really show what's wrong in understanding autism, and in bridging the supposed gap between "high-functioning" autistics and "low-functioning" autistics. Autism is not something that's going to go away. And how can one, in the end, recover from who they are, regardless of how many skills they gain? Those skills, though important and numerous, do not change the structure of the person's mind, and they do not affect autism.

Well, I'll be blogging again now, I'm glad to announce!

I took a hiatus when I was completely (and completely is no understatement) swamped by work, namely in a certain subject. And, so, I'm going to have a little say on the subject.

People shouldn't be forced into subjects that they can't reasonably do.

Easily said, I suppose, but the point is not as obvious as it should be. I've seen this in a few situations. I've watched my sister, who is ADHD and has some very specific learning disabilities, struggle for far too many hours attempting to do math that I would be able to do fairly simply, and by no means is my sister a stupid person. But I guess I hadn't experienced it so personally.

Personally as in about six hours a day with Chinese (made more bearable because I love the subject). That's about as much time as I spent daily in high school. And it usually means a fairly late night (if I do absolutely nothing else (yeah right!) I can get to bed by 10). Before a test, there's more then that. Result is a C/B grade.

Meanwhile, I give a fairly marginal amount of time to philosophy or Asian studies. This should be obvious, given the hours I've been giving to Chinese. I'm getting everything done, though. Result is a set of straight A's. I'm unsatisfied; I really wanted hard work in these areas, especially since that's why I chose this college.

Does this seem reasonable? Why, when my talents might be well utilized in certain areas, am I completely squandering my efforts on a subject I will never be able to do as well as another?

Mind you, I'm not the type to sit around and be a victim, so things are changing. I'm in the process of selecting more difficult classes. I'm also going to attempt (probably successfully) to remove the language requirement. Even so, I'll probably audit the class, but because there's not the level of expectation I can learn at my own pace.

Now, this might seem to be a general rant about the frustration of last month, and in degree it is. But it's also a warning; don't put yourself educationally into a position you can't succeed in while feeling good about yourself, and don't do it to your kids either. It's counterproductive in the extreme. In a situation where it is more necessary, attempt to do it in a way that does allow for some room to not be completely swamped, or at least so it doesn't swamp you.

I had a little interesting experience with this last Chinese class. We were instructed to memorize a passage, if we could, in class and recite it. It wasn't long, a paragraph or so, and so it would take me about an hour and a half, as I'd have to literally memorize all of the component parts and their positions, even if I knew the meaning (which, sadly, doesn't help). It took everyone else maybe (at worst) ten minutes.

Clearly, there are people suited to those things. And then there's me. And, considering it all, I'd probably be better suited with a good, long essay.
 

As an autistic, it's not unexpected that I am not necessarily the most active social being on the planet. And though I am able to communicate in many ways that tend to trouble autistics (myself included, in degree), it doesn't happen that much.

Why? Well, it's a question I've been thinking of again. It's not specific to anything that happened today, but I always allow my mind to wander on the issue.

It's not that I don't know why it is, really. It's just that it's really hard to explain to people who really seem to need that and confront me over the fact that I don't, time and time again. Funny how that works, doesn't it?

A good part of it is just a lack of motivation. I just don't feel any kind of compulsive need to socialize. None at all. That's not to say I can't enjoy social relationships, just that I can operate outside of them with maximum comfort. Thus, unless I can think of a good reason to socialize, I probably won't.

But there are fairly good reasons from my perspective; people's ideas can be interesting and worth engaging. I like idea-motivated people, or people who have generally gone out and address the world in a unique way. And, when given the opportunity, I will go out of my way to engage that.

There's an issue, though. I'll be honest, the people I'm talking about seem to be the exception, rather than the rule. Frankly, people are more likely to talk about local drama of sorts, and I have little interest in that. I might engage it to see if I can redirect to a more interesting topic. And I'll try that somewhat often.

But that works a fraction of the time. Every time it falls through, without being scorned per se but having gained nothing for my use for emotional energy, it gets to me. It feels like a waste. And when most things like this fall through for me, I guess it really devalues social interaction. Why bother if no one really gets anything out of it?

That's most frequently how it comes for me, wasted words, not worth the breath they were carried on. So I've generally taken to the background at this point in life. In the classroom environment I will speak up, but I don't go out to most social events. Heck, I haven't been to the dining hall more than once. That's all in part to the issue that social events of any kind tend to pose for me (like typically associated loud noises), but that's it.

And I enjoy myself anyway. I don't feel that, to live, I need to talk to people in my vicinity. And I don't need to always be at the computer, though I am at times. Just looking around, thinking, and generally being is powerful enough in and of itself. That's something, for me, that's far more worthwhile than the adventures of new target of the day.