tag:blogger.com,1999:blog-39837009634131500642023-12-29T11:34:31.207-08:00An Intense WorldThis is the blog of Troy Camplin, Ph.D. and his wife, Anna Camplin, M.A. After learning our son, Daniel, has autism, Troy began obsessively learning about autism -- until he learned he has Asperger's. We also have a daughter, Melina, and another son, Dylan. This is our story, our thoughts, and our research. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.comBlogger129125tag:blogger.com,1999:blog-3983700963413150064.post-84038934445529579942017-07-18T22:16:00.000-07:002017-07-18T22:16:31.414-07:00Campus Speech Codes Target the NeurodiverseThere is a fantastic piece by Geoffrey Miller on <a href="http://quillette.com/2017/07/18/neurodiversity-case-free-speech/">
The Neurodiversity Case for Free Speech</a> in which he makes the argument that Isaac Newton wouldn't have been welcome on today's university campuses. <br />
<blockquote class="tr_bq">
Ever since the Middle Ages, universities have nurtured people with
unusual brains and minds. Historically, academia was a haven for
neurodiversity of all sorts. Eccentrics have been hanging out in
Cambridge since 1209 and in Harvard since 1636. For centuries, these
eccentricity-havens have been our time-traveling bridges from the
ancient history of Western civilization to the far future of science,
technology, and moral progress. Now thousands of our havens are under
threat,<span class="text_exposed_show"> and that’s sad and wrong, and we need to fix it. </span></blockquote>
Now universities actively run off such people. They'll revise your
evaluation until they get the low score they're looking for and even
claim you weren't "properly hired." Anything to make sure everyone is
the same, non-threatening in any way, and completely institutionalized. <br />
Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-65307049837735486352017-06-23T19:37:00.002-07:002017-06-23T19:37:33.272-07:00On AnxietyIf you are anywhere at all on the autism spectrum, you have anxiety. It seems to come with the territory. It's easy to find things about which to be anxious, but in truth the feeling seems to just be there, as background noise, never ceasing.<br />
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At the same time, there are plenty of things that give us anxiety. Facing new social situations is an obvious one. While we may be standing off to the side, sitting there quietly, seeming to only be listening, perhaps appearing aloof or even arrogant, the fact of the matter is that the situation makes us anxious, and it may take us a while to get used enough to the situation to come out of our shells. That probably won't happen at the end of a party, but it might happen at the end of a week-long academic conference.<br />
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One thing that causes us anxiety is not working on our project, whatever that project may be. Most of the time, <a href="http://anintenseworld.blogspot.com/2014/12/when-your-work-is-who-you-are.html">we are our work</a>, and that means when we are working on a project, we almost don't know what to do with ourselves when we are not working on it. When I am working on a project--whether it's a novel, a poem, a play, a paper, a nonfiction book, or some other project--I am always thinking about that project. I am anxious when I am not working on my project. When I am working on it, I am anxious to finish it. It drives me, but it also drives me a little crazy. I seem to be absent-minded, but I'm always thinking about my project. It never ends, until the project is over.<br />
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And then I start on the next project, and the cycle of anxiety starts all over again.<br />
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Even now, as I am writing this, Daniel is full of anxiety because he has a project he wants to do, but he can't get his younger brother to cooperate with him (or, more honestly, obey him and do everything he says--something that makes Dylan's supreme independence a perfect foil for Daniel). Because he is anxious and frustrated, he yelled at his mom, which caused me to have to stop and make him apologize to her.<br />
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These frustrations/anxieties are part of our daily experience in dealing with other people and the the world in general that constantly <a href="http://anintenseworld.blogspot.com/2016/06/imposing-on-me-all-time.html">imposes</a> on us and prevents us from working on our projects, which is really all we want to do. Daniel is going to have to learn that you can do more with honey than vinegar, or he's going to just stop trying to involve anyone and do work that doesn't involve anyone else to get it one.<br />
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You know, like writing.<br />
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So there are certainly many things that make us feel anxious. The fact that we identify with our work, and not working on our work makes us feel anxious to work is part of it, but it's hardly all. Sometimes, you just feel anxious. And it may not be caused by anything in particular. The fact is that most of the time, we simply feel anxious because we feel anxious. We can look for causes, but how often will that be simple justification of the feelings? The fact of the matter is, anxiety is co-morbid with autism. Sometimes it just is. It is the background noise of the world when you are autistic. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-43340231711585535642017-05-03T08:03:00.001-07:002017-05-03T08:03:24.077-07:00More Support for the Intense World Theory; Or, Why We Hear Better Than YouWe may start looking at auditory signs of autism based on two recent discoveries. One is that autistic people <a href="https://medicalxpress.com/news/2017-05-people-autism-mostwhich-strength.html">hear more sounds</a> than do neurotypical people. The other is that the reason for this is that inhibitory pathways in the brain are <a href="https://medicalxpress.com/news/2017-03-method-diagnosis-autism.html#nRlv">weaker</a> in autistic people.<br />
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Readers of this blog will not find the latter to be the least bit surprising. Weak inhibitory neurons would of course create more intense experiences of sensory input since inhibitory neurons dampen out information. They quiet things down, so to speak.<br />
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With weak inhibitory neurons, the excitatory neurons are necessarily going to dominate. This creates positive feedback, which makes for a more intense experience of one's senses.<br />
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The first article also contributes to the increasing number of sources touting the positive aspects of autism. They point out that autistic people often do better than neurotypical people on visual and/or auditory tasks, spotting more continuity errors in videos and being more likely to have perfect pitch. I have little doubt that my high-level skills in proofreading have everything to do with my autism. Taking in an processing more information has its advantages.<br />
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Unfortunately, that "more information" doesn't seem to include <a href="https://medicalxpress.com/news/2017-03-children-autism-facial-difficult.html#nRlv">human faces</a>. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-7948147217758552762017-05-02T09:14:00.001-07:002017-05-02T09:14:25.335-07:00On the Double-Mindedness Developed Among the DifferentIn <i>The Souls of Black Folk</i>, W.E.B. Du Bois says that blacks have a sort of doubleness in them not found among whites. Blacks cannot just "be themselves," but must always think about how they are being perceived by whites. This creates a sense that you are always of two minds: that you are not only thinking and doing, but that you are thinking about how others perceive you, and adjust accordingly. Whites never have to deal with this. Being the majority and having the majority power, they can just be themselves without worry about how anybody is thinking about them.<br />
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Du Bois would probably not be surprised if he learned that other minorities were put in similar situations in the U.S., but it probably didn't occur to him that there were people out there with different kinds of minds, and that they too would develop such a doubleness.<br />
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I know all about this double-mindedness, because I experience it constantly. I not only have to think about what I'm going to say or do, but I have to think about how others might take it. I can either just say or do whatever I want as I want and hope that I don't do something that will set people off, or I can always consciously think about everything I say or do before I say or do it, testing against what I expect the expectations are (and hoping I'm getting those right). If it takes me a moment to respond to something, it's because I'm going through all this nonsense to make sure I don't say or do something wrong.<br />
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Now, you might expect this to take place in a 45-year-old man, but you wouldn't expect it to take place just quite yet in a 7-year-old boy. However, Daniel has lately been saying some things that shows he--on some level, at least--does understand that he has to engage in this double-mindedness.<br />
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While we all behave differently in different environments--school, home, church, work, etc.--rarely do we think these things through. However, when I asked Daniel one day if he behaved at school the way he did at home, he told me that because he has to keep it together at school, he likes to "go crazy" at home. That is, this is something he's actually thought through. Other children may do the same thing, more or less, but how many would articulate it as such?<br />
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More negatively, Daniel has complained that his "brain is rotten." He understands that the way his brain works is not the same as everyone else. While we would certainly prefer him to think of his brain as merely different and not as "rotten," we get what he, as a 7-year-old, is trying to articulate. When he most recently complained about this, we pointed out to him that I have autism, just like him, and (because the kids happened to be watching Ghostbusters II at the time) that Dan Akyroid has autism. We suggested that someone with as much education as I have and someone who is a successful and funny actor couldn't really have rotten brains, but that rather our brains were just different.<br />
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Unfortunately there is the too deeply human belief that "different is wrong," and Daniel will have to learn otherwise as he matures. Because I hardly thought of my brain as rotten (everyone always said how smart I was), I thought that everyone else, being different from me, were wrong. The way that they thought was stupid, as far as I was concerned. Now, knowing what I know about myself, I realize that it is my way which is divergent and different--but that doesn't mean rotten and wrong.<br />
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Daniel also insists that nobody likes him, that he has no friends. When we ask his teacher, she keeps insisting that he plays with the other kids all the time, meaning that there is some sort of disconnect between what others see happening and what Daniel seems to perceive. I think it's pretty clear that Daniel understands that the other kids all think he's "weird," which he interprets as them not liking him. It probably doesn't help that Daniel directs play more often than not, and can get upset when people aren't "playing right." Most kids aren't going to like that, and Daniel, not understanding why they wouldn't want to be his pawn pieces, interprets that as them not liking him or wanting to play with him. So there is likely some combination of awareness and ignorance at play, though both are driving Daniel to develop this dual awareness.<br />
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It's probably a bit much to expect neurotypical people to allow us to just be ourselves. After all, viewing neurological differences as positive is a recent development, and it's going to take a while to catch on. Maybe there will be a day when people with different neural structures or different cultural backgrounds can just be themselves without having to think about how they will be perceived by the power majority. We don't know what will be gained, or possibly even lost, if and when that happens, but it would be interesting to at least find out. Daniel's double-mindedness is already being developed; perhaps his own children won't have to go through that. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-42900178502522075842017-02-06T11:52:00.003-08:002017-02-06T12:10:55.096-08:00Dallas Symphony Orchestra's Sensory-Friendly PerformanceLast night my entire family attended a special concert for families with autistic children put on by the Dallas Symphony Orchestra. This sensory-friendly performance was the second annual performance, and it is the idea of the conductor himself, <a href="http://www.wfaa.com/news/local/dallas-county/dso-hosts-special-concert-for-north-texas-kids-with-autism/128156317">Jaap van Zweden</a>. The linked news story is from last year, when the first one was put on. We only learned about it this year.<br />
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As it turns out, conductor Jaap van Zweden has an autistic son. It is actually not that uncommon for creative types such as Zweden (or myself---I am a poet, fiction writer, and playwright) to have children on the spectrum. Silicon Valley is famously full of autistic children (and their mildly autistic parents). It should perhaps not be surprising that a combination of strong pattern-detection, strong visual memory, strong long-term memory, weak censor, and weak tendency to follow the crowd (or even be aware of the crowd) is associated with artistic creativity.<br />
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Now, I wish I could report that the symphony had the same effect on Daniel as did Balloonacy, but perhaps because there is so much music in our house and perhaps because Melina is taking piano lessons, so he has heard this kind of music before, he didn't seem all that into it. Of course, it may have been just that he was in a new place and was therefore uncomfortable. He mostly slumped in his chair, but then he also sat in my lap for a bit, during which time he seemed to be paying more attention to the orchestra.<br />
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Of course, his lack of complete focus may have been because he also had something on his mind about which he was primarily concerned, and therefore was barely aware that there was interesting music taking place. The day before, he had bought a solar system to hang up in his room, and I told him we were going to put it together when we got home from the symphony. And that, of course, is precisely what we did the minute we walked through the door. Because when Daniel prioritizes, he prioritizes hard. <br />
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On the other hand, he did say he recognized one of the pieces. J. Strauss, Jr's. <i>On the Beautiful Blue Danube Waltz</i>, Op. 314. It's sometimes hard to tell when he's really paying attention to something. Things in the periphery are often what people one the spectrum are really paying attention to. Maybe he'll be more into it next year. <br />
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Regular readers of my blog know that I have written before about the sensory-friendly performances at the Dallas Children's Theater, particularly <a href="http://anintenseworld.blogspot.com/2015/04/balloonacy-play-good-for-children-with.html">Balloonacy</a>, which was turned into a <a href="http://anintenseworld.blogspot.com/2016/04/troy-and-daniels-trip-to-see-balloonacy.html">video</a>. I am happy that these sensory-friendly performances are starting to spring up in Dallas. They allow autistic children to get exposure to culture, and they allow families such as ours to be able to go out to places without our worrying about how Daniel will behave or react. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-59486398345971545472016-12-08T09:09:00.002-08:002016-12-08T09:09:53.799-08:00Neurodiversity and Group SelectionHumans are hypersocial, but hypersociality doesn't necessarily mean acceptance of diversity. And yet, humans do manage to be both hypersocial and accepting of difference. <a href="https://www.sciencedaily.com/releases/2016/11/161115101244.htm">Recent research</a> suggests that the acceptance of diversity occurred about 100,000 years ago, and allowed for more general accepting of such diversity as autism.<br />
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Why is this important? Well, if wider acceptance of neurodiversity, meaning diverse ways of thinking and behaving, were to be adaptive for groups, we would expect humans expressing such acceptance to have come to dominate. What was later developed as specialization and gains through trade likely started with a general acceptance of different kinds of human behaviors within the tribes.<br />
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Why is acceptance of neurodiversity important? Well, neurotypical people are great at copying what everyone else is doing, but it turns out that as a result, they are actually pretty poor at coming up with new things. Autistic people in particular tend to try to solve things without relying on how things have always been done. This results in innovations that improve the material conditions of everyone in the tribe, and which everyone else dutifully copies. As a result, there is a balance between stable copiers and unstable innovators that keeps human populations on the edge of order and chaos, known as criticality. This is in fact the most creative space a self-organizing network process can be in.<br />
<br /> Presently there is not a lot of acceptance of neurodiversity, at least not in the U.S. There is some anecdotal appreciation of a few people who people think may be on the spectrum, but these people are typically seen as outliers rather than a healthy part of our social networks. So much emphasis is put on everyone being the same and acting the same and thinking the same (lip service to "thinking outside the box" notwithstanding) that people who are in fact different in the ways they think and act and experience the world are held in contempt.<br />
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In fact, it is this contempt in which we on the spectrum are generally held that I try to focus on many of the positive aspects of being on the spectrum. We need to have healthier attitudes toward neurodiversity precisely because groups that don't have such diversity stagnate at best. And really, nature abhors stagnation, meaning there is either growth or death. Dynamic tensions create growth; eliminating those tensions results in equilibrium, or death. A healthy society is a diverse society.Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-28988304856940048652016-10-18T16:22:00.001-07:002016-10-18T16:22:29.744-07:00Shakespeare and AutismThere is a new autism therapy based on the works of Shakespeare called the <a href="http://qz.com/809771/autistic-kids-are-thriving-in-shakespearean-therapy-designed-by-a-british-actress-for-the-royal-shakespeare-company/">Hunter Heartbeat Method</a>. The initial results seem extremely promising. The theater games all make a great deal of sense to me, at least. Even better, from my perspective, is that theater and, especially Shakespeare, the greatest of all playwrights, is being used to help socialize us. He's teaching us to be human all too human. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-17608567096052263812016-09-05T16:02:00.001-07:002016-09-05T16:02:20.756-07:00Literary Interests on the Spectrum -- Fantasy, Comics, and Perhaps SciFiOf course, reading NeuroTribes means recognizing patterns repeated in me. There's something I share with practically every case study mentioned (Wittgensteinian "family resemblances" to be sure!) But sometimes I recognize patterns found in others. One such pattern is the recurring patterns of people on the spectrum reading comic books, fantasy, and fairy tales (I suspect SciFi is also in there, but that hasn't been mentioned in the book--yet, at least). I've never read a lot of comic books (though I have a small collection), and little fantasy or SciFi (I'm a fan of such movies, though).<br />
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One has to wonder what the fascination is with SciFi and fantasy among those on the spectrum. These are magical worlds, different from the world in which we live and experience, but surely such escape is not exclusively autistic. And yet, given the strong connection between the two, what may the popularity of SciFi and fantasy suggest about the true prevalence of autism, broadly understood?<br />
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Of course, I may be simply over-extending here. Autistics' interest in SciFi and fantasy hardly means the causation runs backwards, that interest in SciFi and fantasy means autism/autistic traits. But it would be worth researching. <br />
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<br />Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-65717440185421655432016-09-04T15:39:00.001-07:002016-09-04T15:39:58.222-07:00We MeritocratsI am currently reading <a href="https://www.amazon.com/Neurotribes-Legacy-Autism-Future-Neurodiversity/dp/0399185615/ref=sr_1_1?ie=UTF8&qid=1473027645&sr=8-1&keywords=neurotribes">Neurotribes</a>, which I am sure I will continue to comment on as I continue to read it. Today, however, I want to bring up something I keep seeing in each of the autistic cases Silberman mentions, which is that each of them seem particularly focused on merit.<br />
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I definitely believe in meritocracy, and I always have. It was only reinforced when I read Ayn Rand's Atlas Shrugged, in which Rand (who was almost certainly a fellow Aspie), provides a epic celebration of meritocracy. Indeed, her primary argument against socialism or even the interventionist state is precisely that people are rewarded for things other than merit.<br />
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It is perhaps not surprising that people who identify with their work and who aren't particularly social would think that the best system is one that recognizes people for their actual accomplishments than for their social/political skills. Of course, social skills and political skills are practically the same. Which is perhaps why many on the spectrum I have met have been particularly anti-politics if not outright libertarian. To us it seems a pretty stupid way to get things done, since nothing is getting done while everyone involved get rich and powerful while producing nothing of worth to anyone.<br />
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We thus have a tendency to respect creators, inventors, and other such entrepreneurs but not the kind of people who get what they want because of their personalities or their social skills or who they know. We appreciate the artists and the scientists and the inventors but not the social butterflies and the politicians and the demagogues.<br />
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But let's be honest. We creators need the kind of people who can promote our work, if we're not natural promoters (and we on the spectrum definitely are not). We autistic creators in particular need a promoter in our lives, someone who will make sure our things are published, sent out, or marketed to the right people. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-34031109792159244652016-08-28T14:27:00.001-07:002016-08-28T14:27:02.405-07:00More on the Positive Side of AutismI really do not think that enough attention can be given to the <a href="http://blog.stageslearning.com/blog/the-positive-side-of-autism?utm_campaign=Content%20Marketing&utm_content=38294564&utm_medium=social&utm_source=facebook">positive side of autism</a>. There are jobs and situations out there where "I am autistic" ought to make people light up. Attention to detail and obsession with a topic to such a degree that one rapidly becomes an expert in a field ought to be popular traits. Of course, our different world view is often a deal-breaker, when it ought to be considered one of our strongest traits. But let's be honest, nobody really wants to deal with anyone who truly sees the world in a new or different way. Until and unless people actually learn to appreciate creativity and different ways of thinking rather than merely giving them lip service while actually demonstrating their overwhelming preference for the same old thinking that they're used to, we on the spectrum are going to continue to have a hard time of it. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-25783798168029722812016-08-14T13:17:00.003-07:002016-08-14T13:17:34.627-07:00Balloonacy, AgainI have been mentioned in the Chronicle of Higher Education in a piece on the author of <i>Balloonacy</i>. Scroll down to the second piece, titled <a href="http://chronicle.com/article/New-Leader-Takes-Over-at/236990">Work as Play</a>. They specifically mention my involvement in <a href="http://anintenseworld.blogspot.com/2016/04/troy-and-daniels-trip-to-see-balloonacy.html">this video</a>, based on what I had written on this blog about Daniel's reaction to the play.<br />
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It turns out that the playwright, Barry P. Kornhauser, had in fact written the play to reach children who were either deaf or couldn't speak English--meaning, he had disabilities and language difficulties in mind, even if it wasn't specifically autism. I'm certainly pleased that he was touched by my words, even as Daniel was touched through his play's lack of them. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-79310015593111445372016-08-06T13:55:00.000-07:002016-08-06T13:55:03.471-07:00Autism and the Neanderthal (and Denisovan and other apes) ConnectionThere is a cluster of genes that is found in Homo sapiens, but which is not found in any other ape, including Neanderthals. It turns out that the deletion of this segment (essentially, reversion of the genome to pre-Homo sapiens, at least in this section) can result in <a href="http://medicalxpress.com/news/2016-08-human-neanderthal-gene-variance-involved-inautism.html">autism</a>. They point out that<br />
<blockquote class="tr_bq">
researchers determined that this structure, located at a region on
chromosome 16 designated 16p11.2, first appeared in our ancestral genome
about 280,000 years ago, shortly before modern humans, Homo sapiens,
emerged. This organization is not seen in any other primate – not
chimps, gorillas, orangutans nor the genomes of our closest relatives,
the Neanderthals and Denisovans. </blockquote>
This certainly seems to support my contention that autism is in a real sense <a href="http://anintenseworld.blogspot.com/2016/05/autism-and-human-evolution.html">neotenous</a>, at least if we consider retention "earlier traits" to be a form of neoteny. And given that it seems to result in a brain that is structurally more similar to a young child's (2-4), it may be neotenous in the more traditional sense as well (especially if the cluster of genes in question are turned on during childhood development). While there is a great deal they do not know about this gene cluster, they determined that one gene produces a protein binds with another protein that "allows the cells to capture iron more efficiently and make it available to proteins that require it." <br />
<blockquote class="tr_bq">
"This ability to help humans to acquire and use this essential element
early in life might confer a significant enough benefit to outweigh the
risk of having some offspring with autism," Eichler said.</blockquote>
As I've pointed out <a href="http://anintenseworld.blogspot.com/2016/05/the-importance-of-autism-in-human.html">here</a> and <a href="http://anintenseworld.blogspot.com/2016/05/welcome-to-world-autism-made.html">here</a> calling autism a "risk" is shortchanging all of the positive contributions autistic people (and perhaps only autistic people could have) made to the human race. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-3222001268748813252016-07-31T05:30:00.000-07:002016-07-31T05:30:05.924-07:00Don't Be Rude"Why didn't you do X?"<br />
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"Because Y."<br />
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"I don't want to hear your excuses."<br />
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"Well, you asked the question."<br />
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"Don't be rude!"<br />
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To an autistic person, the first question is a direct question, to be taken literally and to be answered literally. The answer isn't an excuse; it is an explanation. So when you get mad at the answer, the autistic person doesn't understand why you're mad and will respond that you're the one who asked the damn question in the first place, so why the hell are you mad about the answer? And that observation is not at all meant to be rude. It's an observation.<br />
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Something I have never understood (and I'm writing this on this blog because of the very distinct possibility that my inability to understand it is a consequence of my autism) is why people cannot tell the difference between an excuse and an explanation. More, I don't understand why people get mad at your answer when I am pretty sure they know what your answer will be. Why even ask the question. To me, asking the question makes you the rude asshole. Just get to the point. Say what you want to say and stop playing games designed to justify your yelling at me.<br />
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Many of the things we on the spectrum say sound rude to those who are not on the spectrum, but the same is true for us: neurotypical people sound rude all the time to us, when what you're saying is clearly understood by everyone. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-64182856167283432582016-07-30T05:30:00.000-07:002016-07-30T05:30:12.371-07:00Autism is a Pervasive Developmental DisorderThose familiar with autism are perhaps also familiar with the designation PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), but I don't think many understand that autism is itself a PDD.<br />
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I can provide some very specific examples of the degree to which autism is both pervasive and a developmental disorder.<br />
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Most people associate autism with being a communication/social disorder, but the fact of the matter is that it very often affects the body itself in a variety of ways. The fact that autism is a different form of neural construction and information processing should make us not all that surprised that other parts of the body are affected. The gut, for example, is often strongly affected in many of us on the spectrum. My son and I both have gut problems. As I have written about before, our apparent glutamate-glutamine imbalance results in leaky gut, which results in an immune response to gluten. Taking daily glutamine has helped us both. The leaky gut is an aspect of our autism, but it is at least treatable with glutamine supplements.<br />
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But there are other factors at play. I have come to understand autism as potentially <a href="http://anintenseworld.blogspot.com/2016/05/autism-and-human-evolution.html">neotenous</a>, meaning the retention of infant traits while still continuing to develop into a sexually mature adult. In my case, that has meant developmentally underdeveloped heels and arches, meaning I have considerable physical pain in my feet. I also have twisted femurs such that my hip joints rub, also causing pain (especially if a strong low pressure system comes in), which may be related to the DPP since it is in fact a developmental problem.<br />
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I've also never been particularly coordinated. I'm not outright clumsy, but I'm nowhere near being able to be an athlete, and I never have been. Daniel is much the same way. Poor coordination is a common element among those on the autism spectrum, and it's part of the PDD aspect of it.<br />
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Feet pain, hips pain, gut pain -- all seem part and parcel of my own autism. So in my case not only do I have to deal with communication breakdowns and various misunderstandings, but a considerable amount of physical pain and diet restrictions as well. All just part of the fun of being on the spectrum. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-82809989124188086782016-07-29T13:38:00.000-07:002016-07-29T13:38:01.068-07:00Yes, I AM an Autistic PersonAm I a person with autism or an autistic person?<br />
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The latter identifies the person with disability; the former is "person first," and suggests that the person and the disability is different.<br />
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If we are talking about a paraplegic or someone who lost an arm, person-first language would make sense. However, I am not a person with autism. That is, if you could "take away" my autism, there would not be a "Troy Camplin" left that in any way would resemble who I am. Autism is a brain structure difference, and that difference results in a particular way of thinking, behaving, acting, interacting, etc., and affects personality.<br />
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That is, I am utterly indefinable outside of the autistic structure of my nervous system. The same is true of my son, Daniel. He would not be him, with all his wonderful capabilities and occasional frustrations and difficulties, aside from the autism. Daniel is an autistic person. So am I. We are not people with autism, as though the autism could be taken away and we would remain the same (absent a few communication difficulties). No, we are autistic people. Quite different in our thinking, behaviors, interactions, etc.<br />
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This is different from saying I am a person with dark brown hair (or, increasingly, without much hair). The color of my hair does not affect my personality. I am a person with hazel eyes. I am a person with slightly low blood sugar. I am certainly a person with a large number of traits that have nothing to do with my personality, behaviors, thinking, actions, etc. Skin color, nationality, ethnicity, etc have no effect on my morals, behaviors, interactions, etc. But my being autistic does. <br />
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The thing with the "person first" language is that it participates in the medicalization of autism. If a person has cancer, you would definitely say they are a person with cancer and not call them a cancerous person (talk about a difference in meaning!); it's a person with diabetes, not a diabetic person; it's a person with psoriasis, not a psoriatic person. Things that can be potentially cured, treated, or truly controlled are things appropriately medicalized, as they are diseases of different kinds.<br />
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But I am not a disease. I don't have a disease. And I really don't have a disability, except from a purely neurotypical-centric world view. Nobody would consider me disabled because I'm left-handed in a right-handed dominant world. Many things are designed exclusively for a right-handed world, making many things difficult for those of us who are left-handed. But do those difficulties make us disabled? Of course not. We adjust. We sometimes find left-handed utensils. Sometimes people adjust to us (letting us sit with our left elbow away from everyone at the dinner table, for example). But we're hardly disabled on account of it.<br />
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And the same is true of being on the autism spectrum. I adjust to the neurotypical world. I try to find autism-friendly social situations when possible. And sometimes neurotypical people need to adjust to us. Failing to do so is simply selfish and rude. Especially if we tell you that we are on the spectrum and explain our communication differences. If we do that and you call those things "excuses" and refuse to adjust your expectations, that makes you the asshole, not us. We don't mean to be rude, even if we sometimes do things that can be interpreted by neurotypicals as rude; but when we apologize and explain ourselves, the decent thing to do is to accept our apology and to try to understand the communication breakdown with us.<br />
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To say someone is a person with something is to say that they remain the same whether they are with the thing or not. I am the same person whether or not I am with my computer, whether or not I am with my cup of coffee; even whether or not I am with my wife and children. I'm a man with a wife and children, not a wife and child person. But I am most certainly an autistic person. It is part of my state of being. My very existence is unthinkable in its absence. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-75635179219872145832016-07-23T12:52:00.001-07:002016-07-23T12:52:22.415-07:00A Literature of Autism for Empathy-CreationOn my main blog, Interdisciplinary World, I wrote about a <a href="http://zatavu.blogspot.com/2016/07/fiction-for-empathy-in-bibliotherapy.html">CNN article</a> that discusses some of the more recent work that has been done on the connection between fiction and empathy-creation. This connection suggests several things to me regarding the gulf between autistic and neurotypical people.<br />
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One of these is perhaps very obvious, which is that autistic people need to read more fiction, and neurotypical people need to read/view more fiction with autistic characters. What is perhaps less obvious is that autistic people don't actually seem to read much fiction or be all that interested in it (perhaps because too many works of fiction do not have many characters to which they can connect). Further, there is probably not a lot of fiction out there with explicitly autistic characters.<br />
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This means that autistic people cannot create the anchor needed to become interested in fiction and thus be exposed to other minds than theirs, and neurotypical people cannot delve into the fictional minds of autistic characters to develop empathy for them.<br />
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Meaning, we need a literature of autism. Or, at the very least, a reading list of autistic authors and fiction with autistic characters. Anyone care to contribute to creating that list?Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-5463789910594847632016-07-16T05:30:00.000-07:002016-07-16T05:30:05.086-07:00A Pathological Look at Neurotypical Behavior<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>When you read about autism, you
typically read about it as a pathology. Autistic people are viewed as being
normal people with pathological deviations from the norm. Every so often you
will come across an article that delineates a few of the special abilities of
people on the spectrum, but even in doing so, it comes across as “well, at
least there are a few positive things that come out of this tragedy.”</span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Autism is a structural variation in
the brain’s architecture that gives rise to differences in processing and in
different abilities. One may even argue that it gives rise to a different kind
of mind. The vast majority of those people are in the “mild” end of the
spectrum, though a great deal of focus is on the “extreme” end, with those who
often cannot speak and seem to be particularly mentally disabled. This focus
further pathologizes the spectrum precisely because it does not fully or even
properly represent the reality for most people with autism. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>To fully understand my point, I want
to treat those not on the spectrum as though autism were the norm and what we
now call neurotypical behavior were the minority. That is, I want to treat
neurotypical people the way they treat people on the autism spectrum, from the
perspective of someone on the spectrum. Because, from our point of view, you
are full of deficits. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div align="center" class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;">The Pathology</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Irrational behaviors are one of the
primary aspects of neurotypical people. Very often decisions are made without a
great deal of thought or, certainly, research. This is especially true of their
opinions. Whereas a sensible autistic person will do a great deal of research
before developing an opinion or coming up with a proposed solution,
neurotypicals have been observed to have an immediate opinion on things
without, apparently, knowing the first thing about the topic. This is different
from the kinds of errors autistics made from managing to miss something in
their extensive research; rather, the neurotypicals carelessly won’t do any
research at all before making a decision. And if they do any research, it will
be at best a truncated version, as if they are impatient to come up with any
answer at all rather than to make sure they have the right one.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>It seems that a strong reliance on
emotions is a typical reason for this immediate, almost knee-jerk, way of
making a decision. As a result, it is not uncommon for them to agree with a
solution that sounds good, sometimes regardless of the overwhelming evidence
against the proposal, rather than something that has a track record of actually
working. This seems to especially be the case in the areas of economics, the
social sciences, and government. While this same tendency does allow them to
respond more quickly to others, sometimes that is done at the expense of
properly assessing the social situation. Fortunately, they do seem to have a
particularly strong ability to make that proper assessment, so we must admit
that in this particular case their pathological tendency toward immediate
conclusions is often beneficial. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Having said that, there are some
very strong negatives of that ability that seem to be combined with a kind of
empathy that makes them more likely to identify more with people like
themselves than with different people. While we autistics have a tendency to
not be judgmental or biased, neurotypicals are terribly judgmental and biased.
They judge people on things like race, sex, gender, deviations from the way
they themselves think, culture, religion, and pretty much any difference one
could possibly imagine, often to the point of hating members of other groups.
Some autistics who have been raised with these people have learned these behaviors
themselves, even though they are not typical to us. This makes associating with
neurotypicals potentially dangerous, unless we remain on our guard against
their biases. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>This note on this particular moral
deficit brings me to the topic of the large number of moral deficits commonly
associated with neurotypicals. They have an under-developed sense of loyalty,
and many do not seem to show any degree of loyalty at all. Further, they seem
willing to lie about just about everything. The primary use of language for
them seems to be to lie to each other. They will tell each other they look nice
when they don’t; they will say one thing to one person, and another to another;
they will backstab; they will tell their friends they are right when they know
their friends are wrong. I could go on and on with the ways they lie to
everyone. They will also exaggerate and say things they don’t really mean. They
will sometimes use words to mean completely different things. For example, I
recently heard one of them say, “Give me a smack.” Which seems an odd request.
But then I saw their neurotypical partner give them a kiss in response. How
strange to ask for the opposite of a kiss and then to get a kiss! As a result,
it can be very frustrating to deal with neurotypicals. You never know if they
really mean what they are saying, you do not know if you can ever really trust
them, and if you make the mistake of thinking they think the way you think, you
will too often find yourself screwed over without your understanding what just
happened. </span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Another odd behavior neurotypicals
exhibit is their habit of “small talk.” From what we can tell, small talk
appears to be talking just for the sake of talking. A “how are you doing”
results in the same non-answer of “fine.” It seems unlikely everyone everywhere
at all times is truly “fine,” so it seems that that is a non-answer to what is
in fact a non-question. It has been observed that if you give an actual answer
to the question, the questioner gets frustrated and impatient, as though they
are annoyed that you would actually answer them. A whole conversation can
actually go on like that, with general questions giving rise to pat answers so
that you could actually change out any pair of people and you would end up with
the same conversations each time. The vast majority of their conversations are
not about anything of any substance, and, again, they seem positively annoyed
if you try to engage them in such a conversation. As a group neurotypicals seem
positively frivolous most of the time. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>This frivolity extends to their
work. They treat work as a social experience rather than as work. They don’t
seem to treat work seriously or to engage in it with the kind of attention we
autistics do. How any of them can keep a job is a mystery. Perhaps their
ability to lie to their bosses and to pretend deference to them is what keeps
them employed despite their inherent laziness. They also do have a tendency to
do things exactly as they are told to do them rather than to find new ways of
doing things. While one could view this as a lack of creativity on their part,
in many cases it is useful to have a group of people who will unquestioningly
do what they are told. If you can keep them from wasting their time
socializing, businesses could make good use of this tendency to conform and
engage in groupthink. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;">How It Feels to Be Made a Problem</span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>I’m guessing you didn’t like the
above description of yourself. You no doubt agree with many of the things
listed, that they are all-too-often traits of the typical person. And no doubt
many of you have made positive efforts to overcome those things—especially such
things as racism and sexism. Indeed, we on the autism spectrum also make an
effort to overcome what are perceived to be deficits. And yet, there are no doubt
things I discussed above that you would argue are unusual, to say the least,
interpretations of your behaviors. Well, guess what? That’s how we feel about
many of the things we read about people with autism. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>For example, we read that we do not
have empathy or a theory of mind. That’s utterly ridiculous to us. We fully
understand you have a mind—we just treat you like you have a mind like our
minds, which results in a number of errors on our part. But guess what? You do
exactly the same thing. You treat us as though we ought to have your mind, and
when we obviously do not, you actually go so far as to declare that we don’t
have a theory of mind! In the past people used to dehumanize others from other
races and cultures using exactly this same logic. Since the person from the
other culture does not act like us, they must not be human like us. We now know
this to be untrue—and to be outright racist—but this way of thinking still
manages to creep into studies of people with autism. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Yes, there are studies of young
children involving hiding a toy, removing the child who saw where the toy was
hidden, then moving the toy elsewhere and bringing the child back in where the
young autistic children do not properly recognize who knows what, but where are
the studies of older children and even adults? Why is it that we autistic
adults don’t make this mistake? Could it be that the development of this
ability is simply delayed rather than absent? Indeed, I see a great deal of
evidence that people with autism have a tendency to have to learn through
direct instruction many more things than do neurotypical people, who seem to
have a large number of instincts that allow them to learn certain things more
quickly. This is a difference in learning, not necessarily a disability or
pathology. It is slower, but more accurate. As with anything, there are
tradeoffs. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Finally, I want you to consider
something else we autistic are always hearing. Given the negative aspects of
neurotypicals listed above, what would you think of calls to fix you? From an
autistic’s perspective, you would be much better people if you were more
autistic. You would lie less, be less biased and judgmental, and be less
frivolous. You would waste less time at work and get more work done. You would
say what you mean and mean what you say. From our perspective, life would be
much better for you if you were more like us. Now how does that make you feel?
I can describe you as a pathology, as a problem that needs to be fixed. I am
certain you didn’t like it one bit. Well guess what? Neither do we. If people
would spend more time talking to us rather than studying us as some sort of
black box that can only be understood by external observation of our behaviors,
you may have known that by now. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;">Different Isn’t Worse</span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>People with autism aren’t broken
normal people. We are different. Our brains have different architectures,
different biochemistry. It is driven by differences in our genes. All of which
give rise to a different way of thinking and thus to different minds. Some of
our minds are closer to neurotypical minds than others. It is a spectrum, after
all. And some people with autism are definitely disabled when it comes to
living in the neurotypical world. But then, there are extreme examples of the
neurotypical mind as well—people who are pathological liars, people without
morals, people who cannot seem to tell the difference between themselves and
the external world. The difference is that they are closer to you, and thus
seem more normal to you. To me, a man whose autism would be considered “mild,”
those with severe autism see more normal. I get how they are thinking. It is
different, not wrong. And if people were more accepting of those differences, I
would predict that many of our extreme negative traits would lessen
considerably. We are frustrated, and that frustration comes out in a variety of
negative ways. But then, consider what would happen if everyone treated you as
a disease needing to be cured and not truly understood in the least? </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Coming to this understanding between
autistics and neurotypicals matters. Given the negative social consequences
felt by pretty much everyone on the autism spectrum, we can only conclude that
autism is one of the last ways of being human for which it is still completely
acceptable to discriminate against. We are punished in the schools,
discriminated against there, with the result that only around half graduate
high school. Those who go to college don’t do much better. And even if, like
me, one not only graduates from college but gets graduate degrees, one finds
upon graduation that the work world is almost completely hostile to you. Not
because we can’t do the work—because not only can we do the work, we will
likely do it better than the average neurotypical person—but because we don’t
interview well, we don’t acknowledge hierarchies, we are blunt, we come across
as arrogant, and we aren’t social in typical ways. </span></div>
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<span style="font-family: "Georgia",serif; font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>I wrote this piece in order to help
the average person understand what it’s like to be treated as a pathology. It
can just as easily be done to you as it has been done to us. Does that mean you
are a problem that needs to be fixed? Or does that mean we ought to be
considered fellow human beings whose minds are part of the natural variation
among human beings, whose contributions to society are vital for social health?
We correctly recognize that acceptance of cultural, ethnic, racial, and sexual
diversity results in a healthy society. Perhaps we can one day soon include
different ways of thinking, different kinds of mind as well. </span></div>
Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-52894638315020757542016-07-15T13:21:00.002-07:002016-07-15T13:21:26.560-07:00Neurotypicals Have a Communication DisorderI generally disdain the very idea that ignorance is bliss, but I may have come across an example of where it is most definitely true.<br />
<br />
It is one thing to have everyone constantly misunderstand you and misinterpret what you do or say, but it is quite another to understand that everyone is doing that while also knowing there is almost nothing you can do about it. How do you control unconscious behaviors? If someone brings your attention to them, you can practice not doing them, but even that will only get you so far when it's a natural reaction to you.<br />
<br />
It is remarkably easy for someone on the spectrum to get into the flow state. The flow state is one where you are mentally completely committed to what you are doing. The rest of the world drops away when you are in this state. And for me at least, it is a state of happiness.<br />
<br />
Pop my bubble, and I can literally feel my brain cringe in annoyance. I may then immediately appreciate your popping my bubble (if, say, the house is on fire), but you're still going to get a flash of annoyance from me. I cannot help it. And even having it pointed out to me that I flash annoyance at you probably won't do anything to help me fix it. It's a gut reaction.<br />
<br />
In the past, if you popped my flow state bubble, that was guaranteed to result in me having a meltdown and chewing you out. The fact that I have moved from that reaction to a momentary flash of annoyance means I have in fact improved in my reactions. I am sure my wife appreciates the fact that I had stopped having the strong reaction years before I met her. But I'm equally sure I have annoyed her with my look of annoyance at being brought back to the real world.<br />
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The problem is that people don't understand why I have the reaction I do, and they misinterpret it to mean that I'm annoyed at them. I'm not. I'm momentarily annoyed I was broken out of the flow state. If they did it to help me, I'm grateful and appreciative--and I try to let that be known. But all too often people care only about the nonverbal communication and not the verbal one. I cannot help the former one, and the latter one is always going to be honest. But people take it the opposite way.<br />
<br />
Because of this, autism is considered to be a "communication disorder." However, if I was in a flow state and I was brought out of it by someone on the spectrum, they would understand my look. And they would accept my expression of appreciation as honest. We would communicate to each other quite clearly. It becomes disordered when it takes place between an autistic and a neurotypical person. And the disorder works both ways. To me, neurotypical people have a communication disorder. They do not communicate well, or even honestly, most of the time. You think you've smoothed things over with them, and they are still harping on it the next day. I supposed they communicate clearly enough to each other, but to me, they can't communicate jack squat most of the time.<br />
<br />
If I weren't completely aware of all of this, life would perhaps be less frustrating. I would go through life unaware of all of these things, occasionally confused about why something has fallen apart socially, but mostly being blissfully unaware that there's anything wrong. I got by in that state for 40 years.<br />
<br />
But now I know. I know, and there's little I can do about it. Unless I manage to educate every single neurotypical about autism and the fact that there are a whole lot of people out there with whom they are constantly miscommunicating. But I supposed that's the Sysiphian task set for me. The world is less because of this lack of understanding. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-30827110905217048272016-07-13T20:04:00.000-07:002016-07-13T20:04:02.418-07:00Non-Verbal Communication and Autism -- Some Personal ConsequencesAutism is considered to be a communication disorder. It is of course much more than that, and the definition of dis-order depends on one's standard of order, but in a world dominated by neurotypicals, our differences are considered to be disorders. And given the consequences, we might as well call them that.<br />
<br />
When we think of a communication disorder, we are typically thinking of language as communication. However, much human communication is non-verbal, and here autistic people face a number of hurdles as well.<br />
<br />
I recently came to understand the degree to which this is true in a recent situation in which I was being correctly redirected to do something other than what I was doing. When the person redirected me, I realized she was right and that I should be doing something else, so I immediately complied. A bit later, though, she asked me if it annoyed her that she had redirected me.<br />
<br />
When I am concentrating on something--as I was in this case doing--I tend to get "in the zone." If you do or say something to get me out of the zone, I feel immediately annoyed. I cannot help it, but I can often get over is as immediately as I feel it. What I didn't realize is that I also showed that annoyance on my face. Which is just as immediate and something I can't help.<br />
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Now imagine that I have been doing this all my life. Which I have. Without realizing it. Which I have. How do you think people will react to me? Or think of me?<br />
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For my regular readers, you may remember that this is <a href="http://anintenseworld.blogspot.com/2016/04/a-day-at-work-with-aspergers.html">not the first time</a> this has happened to me where my attention was drawn to the look I was giving.<br />
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But I do have to wonder how many times something has gone awry because I was giving a look that I was unaware I was giving. <br />
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This just ends up on my growing list of things I seem to have to tell people about me so they won't misunderstand my words, actions, and now facial expressions. Meaning I'm almost certainly going to have to always tell everyone I'm on the spectrum just to create the conditions under which I'll be less likely to be misunderstood. Meaning I'll get all the fun and pleasure of being directly discriminated against when people know I'm on the spectrum.<br />
<br />
So those are the choices: open discrimination against me for being on the autism spectrum or have people decide they don't like me because of my "attitude." I've decided to take my chances with the former. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-46126105574555881882016-07-08T14:43:00.001-07:002016-07-08T14:43:15.927-07:00Reflections on Being a Student on the SpectrumTeaching 2nd grade summer school Reading and Math, I cannot help but reflect upon my own elementary school education. I was always considered by pretty much everyone, including my teachers, to be a very intelligent child. Any bad grades were considered to be laziness on my part.<br />
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One area in which I struggled throughout my career as a student was math. I particularly had a very hard time with word problems. I also had some problem with certain areas of multiplication, and fractions made no sense whatsoever to me until I took high school chemistry. I failed 8th grade math, made a C in Algebra 1 (Freshman), Cs and Bs in Geometry (Sophomore), a B in Algebra II (Jr), and an a in Calculus and in Trigonometry and Analytical Geometry (Sr). In college, I made a C in Calculus I, and I failed Calculus II so miserably that I managed to make a fairly low F even doing all of the extra credit.<br />
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Math in elementary school has now gone almost completely over to word problems. When I was in elementary school, tests would have almost all numerical problems, and only about 2 word problems. That meant I could miss the word problems (which I almost inevitably did) without failing the test. But today, the quizzes I have had to give involved nothing but word problems. Meaning there's a very good chance that I would have been failing math well before 8th grade.<br />
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While there is no question that we need to teach children how to formulate problems (which is what word problems do), it doesn't make a lot of sense to teach formulating math to children who cannot add, subtract, multiply, or divide. That is, you absolutely must have the mathematical skill in place before you can move on to mathematical reasoning and formulation of problems. The latter may be most important overall, but you cannot skip establishing the foundation.<br />
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Now it may be that this way of doing things is the best way for certain students. I won't deny that possibility. But it's coming at the expense of other children. And if this is true, then the way I was taught it came at the expense of the kinds of students who do well in the way math is taught today. There are trade-offs. In this particular trade-off, I would have been the one traded, from doing well enough in math to pass to failing very much earlier on.<br />
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Another thing I have noticed about education today is that it's designed to be much more social. There's more group work and "shoulder partners" and sitting together on a rug and so on. None of this is exactly inviting to anyone on the spectrum, and I certainly wouldn't have liked school nearly as much if it had been run like it is today. <br />
<br />
Indeed, though I was perhaps seen as highly intelligent but quirky (to put it nicely) as a child in the 1970s, I think there is little doubt that in the current school environment that I would have been identified as having something "wrong" with me. I would have been seen as refusing to participate and I probably would have had some quite negative reactions to a lot of this forced sociality (something perfectly fine for neurotypicals, who don't find it forced at all). I would have likely been identified as having ODD, if not Asperger's/autism. I probably wouldn't have been identified as having ADD/ADHD, because I was never outwardly hyperactive (inwardly, I'm in a dead run almost all the time), but I would have likely been sullen and I wouldn't have liked the classroom environment at all.<br />
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In other words, I think I would have done worse in school today than I did in the 1970s. <br />
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If it's true that I would have done worse under the way teaching is done today, then we may have some explanation for why none of the education reforms we've tried have ever worked to improve scores. It's because while the reforms help some children learn better, it ends up acting as an impediment to others. It also may explain the "rise" in ADD/ADHD and autism, since the way students are taught today seems to draw out many of their identifying factors.<br />
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But we ought to be a little disturbed that someone like me would probably no do well in today's system. The system I went to school in put me on the path to succeeding in college and graduate school. I fear that this system would have had me identified as a problem student and perhaps even having the autism I do in fact have. That is a problem because even though there is a lot of rhetoric around people with disabilities being able to succeed, the fact is that nowadays we are put on a pathway to "succeed" outside of a college trajectory--mostly because we are left unprepared to go. My brother, who has dyslexia, was discouraged from going to college in high school--and he now has a B.A., an M.A., and an M.F.A. You cannot tell me that autistic children aren't discouraged, directly or indirectly, from going to college.<br />
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What is worse is that, if I am right that <a href="http://anintenseworld.blogspot.com/2016/05/welcome-to-world-autism-made.html">the majority of advancements in the world were made by autistics</a>, then we are doing a terrible disservice to the world at large by creating an educational system that educates perfect copiers well, but leaves reformers/inventors/creators on the sidelines. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-85060612735597550752016-07-04T12:51:00.003-07:002016-07-04T12:51:58.302-07:00A Proposal for Education ReformAll teaching should be structured so that autistic children can learn the material. Because if an autistic child can learn it, a neurotypical child will be able to learn is using that method as well.<br />
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That means anchoring language to images and repetition. <br />
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But it does not work the other way around. What works for neurotypical children won't necessarily work for autistic children.<br />
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Coincidentally, both do best in a Montessori school. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-20714314533861685642016-07-02T05:30:00.000-07:002016-07-02T05:30:30.490-07:00KLE1738, GABA, and a Possible Autism ConnectionI have written on the role of GABA in autism <a href="http://anintenseworld.blogspot.com/2016/06/a-variety-of-genetic-pathways-to.html">here</a> and <a href="http://anintenseworld.blogspot.com/2016/05/gaba-receptor-and-synaptic-pruning.html">here</a> and <a href="http://anintenseworld.blogspot.com/2015/01/glutamine-autism-and-leaky-gut.html">here</a>. GABA is involved in calming neural activity, and having less of it is associated with autism. Now we have discovered a <a href="https://www.newscientist.com/article/2095769-gut-bacteria-spotted-eating-brain-chemicals-for-the-first-time/">gut bacterium</a> that seems to survive only on GABA.<br />
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Many of us on the spectrum also have gut problems. It may be that we need these bacteria, named KLE1738, but it also may be that one can have too many. Or, seemingly oddly, not enough.<br />
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It may very well be that one needs these bacteria to clear out GABA. Without enough KLE1738 to eat excess GABA, it's likely that GABA would get converted back to glutamate (enzymes work both ways, after all). This would keep glutamate levels high, and glutamate both contributes to positive feedback in the brain and to leaky gut.<br />
<br />
This may in fact be the more likely scenario simply because too many KLE1738 would result in starvation and result in the numbers dwindling back to normal. At the same time, one could imagine a scenario where there is a boom-bust cycle of KLE1738, with an alternation between too many and too few. Both too many and two few would result in GABA imbalances. And these swings could also result in the seeming bipolar behaviors we see in many on the spectrum. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-25968759350666435042016-07-01T20:56:00.002-07:002016-07-01T20:56:42.135-07:00Autism and Behavior, Choice and What Cannot Be HelpedThere are a great many thing about human beings that we think can be helped and/or chosen. The most obvious that comes to mind is homosexuality. Many consider homosexuality a "choice," meaning homosexuals choose to be gay. Anyone who actually knows anyone who is gay knows this to be nonsense---most have known they were gay since at least puberty hit. They felt a natural attraction to members of the same sex that is as natural as the majority's attraction to members of the opposite sex. I no more chose to be straight than a homosexual chose to be gay. Our sexual orientations and subsequent behaviors are natural, no matter what those orientations and behaviors are.<br />
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But we forget---or don't realize---the degree to which many of our personality traits are genetically wired into our brains. Degrees of aggression or passivity, argumentativeness or agreeableness, curiosity or lack of interest in new things---one could go on and on---are primarily genetic in nature, and are often reinforced by the environments they create by the expression of those personality traits.<br />
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The same is true of people on the autism spectrum. We all have personality traits that are inherent to our brain structures and neurochemistry---which is also true of neurotypical people and their brain structures and neurochemistry---that strongly affects what behaviors are natural. And we cannot help those behaviors any more than a neurotypical person can help theirs. I mean, let us face it, the autistic ability to concentrate for long periods of time on one thing of high detail is something neurotypical people ought to be able to do, right? There are plenty of jobs out there that require those skills. All you have to do is change your behaviors and you should be able to do it, right?<br />
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Of course, the majority of neurotypical people (perhaps all of them) are horrified at the very thought. They would complain that it's boring, inhumane to make someone sit for hours and pore over highly detailed text or computer programs or whatever else fits the above description without much of a break, but the fact is that someone like me loves to do just that. The best job in the world for me has been the occasional proofreader jobs I have gotten, where I just looked for errors in texts. Eight hours of that is great. Love it. I am accurate and I am fast. It's a great job.<br />
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But I'm equally sure that almost nobody else would want that job. Is there something wrong with you if you would hate doing that? I can do it because of how my brain is structured. And most cannot do it because of how their brains are structured. It is neither better nor worse, just different. And you should be thankful people like me exist, to do the jobs that you don't want to do (and perhaps cannot do), but which need to be done. Probably everyone who writes code is somewhere on the spectrum. Certainly editors of code are.<br />
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So keep these things in mind when you see how someone is behaving. They almost certainly cannot help it. Which doesn't mean that behaviors cannot and will not change. If there is enough negative feedback (in both senses of the term), a person can be nudged one way or another. But even so, we shouldn't be surprised if there is some residue of the original behavior, or that we find it cropping up here and there. I have had to adjust to the realities of a neurotypical world that is outright hostile to many of the ways I behave---even those that we commonly give lip service to being positive traits, like creativity and "thinking outside the box" (two things most people actually deeply despise).<br />
<br />
The current shift toward acceptance of homosexuality as a structural difference that results in behavioral differences does give me hope, though. We just need to help people to understand that being on the spectrum means we have structural differences that result in behavioral differences. It will probably help as we learn that autism doesn't mean just the most severe versions, but means people like me, people who have college degrees and are married and have always been considered a little "odd" or "quirky," but who find that the demands of society make living in society difficult at best.<br />
<br />
All of this reminds me of the movie about Alan Turing, who was ostracized because of his homosexuality. People thought him a bit odd because of his autism, which was harder to hide than his homosexuality, but it was the latter for which he was punished. The feeling one gets from the movie is a feeling of outrage that a society that benefited so much from this man would then turn on him because of a trait he couldn't help.<br />
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It seems to me that we need to see some movies where the situation is as I have found it---that a society that benefits (or could benefit) from someone turns on him because of his autism. Because that is the reality right now for the vast majority of us on the spectrum. We are either directly punished if we admit to being on the spectrum (as has happened to me) or we are indirectly punished for our autistic behaviors, despite whatever benefit we may be bringing. We are deserving of a movie that will elicit such outrage.<br />
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At the same time, If the Alan Turing movie had been made in the 20th century, it wouldn't have elicited the same degree of outrage. Many if not most would have considered the sin of his homosexuality to outweigh his contribution. The movie could make its point precisely because we don't need the point made.<br />
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The same is likely true of autism. We will have to have a revolution in the way we think of autism. We will have to depathologize it (for the vast majority of people on the spectrum), and recognize that our "sins" are behaviors we cannot help, and which others need to learn to accept. We will have to have the autism version of <i>Ellen </i>and <i>Will & Grace</i> and change the cultural attitudes. We are different and our behaviors are odd---but no more or less odd than homosexuals' behaviors were considered within the lifetimes of most people (and still are by too many)---but we are humans of a different kind, and we deserve to be treated as such. Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-31946375964474514762016-06-29T19:04:00.001-07:002016-06-29T19:04:05.831-07:00Alternative Certification in Elementary Special EducationThe reason I want to become a teacher is that I want to teach Special Education. And I want to teach SpEd because the majority of children in SpEd have autism. I believe that, being on the spectrum myself, I can relate to the autistic children in a way neurotypical teachers can't.<br />
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To do this, I have to go through alternative certification. That means going through an alternative certification program. The majority of this program is dedicated to teaching us classroom management. This has meant a lot of large-group presentations with accompanying "ice-breakers." Having to be in the middle of a huge group of strangers is of course bad enough, but then having to engage in these "ice-breakers" that are both so incredibly transparent to me and which does not seem to actually break the ice or allow you to actually interact with anyone long enough to get to know them ("Hi. I'm Troy. I'm doing Elementary SpEd. You?" They answer, then before anything else is said, we're told to sit.) makes the entire thing borderline intolerable.<br />
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They bombard you with social interactions and then have you watch videos of social interactions (teachers teaching students, demonstrating certain classroom management techniques) and ask you to say what you saw. This seems easy enough for the vast majority of people, but for someone like me, it's just a confusion. I don't know what I'm seeing. I need to be told what to look for so I know what I'm seeing.<br />
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It would be sort of like asking you to take a quick look at a a group of complex organic molecule and then telling me what you saw. There are a few who can do it, but most cannot. If I asked you to look for ring structures and tell me how many you saw, though, almost everyone could do it. Understand that seeing an unfamiliar social situation and asking me what I saw is like having someone do the first scenario. There were a few times when someone asked to see the video again. When that happened, I had a better chance of understanding what was going on. I need repetition and to be told what to look for. So the entire training is, for me, backwards.<br />
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That was all day, Monday through Friday, last week. This week and the next four weeks we are teaching summer school (2nd grade Reading and Math for me) 8am-1pm and training 2pm-5:30pm. While teaching, we have a mentor teacher watching us and a coach to assesses us. I will be assessed on whether or not I am doing proper classroom management and if I have all the right things up on the walls in the right places at the right time.<br />
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All of this is extremely overwhelming, anxiety-inducing, and exhausting. I'm about to collapse from exhaustion every day--and I mean from the moment I wake I am exhausted.<br />
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We on the spectrum are easily exhausted by all of these kinds of things. In no small part because our brains are dominated by positive feedback, meaning the more we work our brains, the more our brains work. But positive feedback in a limited system (like the brain) doesn't just go entirely out of control. No, it undergoes a boom-and-bust cycle. Boom it too much and it crashes pretty hard.<br />
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The problem is that the time there is not all our day. No, we also have to plan our lessons and make everything the kids need and copy everything, etc. We are completely responsible for all of these things. Thus, we in fact have 16+ hour days. This is impossible for someone on the spectrum---not working for 16+ hours, which we are more than capable of going (for our obsessions), but engaging in a high degree of social interactions and social learning as well as this much work.<br />
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What is worse is that since I am going to be a SpEd teacher, I won't actually be doing all of the things they are teaching me on a regular basis. Don't get me wrong. It's useful information that I'm sure I'll use on occasion. But if I have a SpEd classroom, none of this will work because the children will not respond to these sorts of social pressures and subtle movements. And if I'm a pullout teacher, I will only have a few children at a table, where I will be interacting with them in small groups or even one-on-one. And the main teacher will be doing all of that.<br />
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So in theory, I could bomb this training and not get hired for a position that doesn't really require any of this training.<br />
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Fortunately, I believe this is only theoretical, since I do have a decade of teaching experience---meaning, I have good presence and a "teacher's voice" already in place. Since I mostly taught college students, I didn't have to stand and scan, but it's surprising how many techniques I already developed all the same.<br />
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The goal, then, is to survive the next four weeks, pass the certification test, and find a full time Elementary SpEd job.<br />
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<br />Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com0tag:blogger.com,1999:blog-3983700963413150064.post-8703131172696049972016-06-06T09:18:00.002-07:002016-06-06T09:18:36.826-07:00In the Interest of JusticeToday I had to go to court because I had forgotten to put in a bulk pickup request in a timely manner.<br />
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If you are on the spectrum or if you know someone who is, you are likely familiar with the issues with short term memory. I can intend to do something, and forget completely that I need to do it. I can see the limbs or bulky trash set out on the curb as I turn into my driveway, think to myself, "I need to make the bulk pickup request," and forget between getting out of the minivan and opening the front door (everything is behind me, so out of sight . . .). And naturally, I will remember to do it when I'm at Starbucks, a week later, randomly.<br />
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I have received letters telling me that I need to make the bulk pickup request. I'm not sure how many, though today I learned it needed to only be one before they would issue a citation. Which I received this past month, sending me to court today.<br />
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I have written about institutional discrimination against people with autism <a href="http://anintenseworld.blogspot.com/2014/12/institutional-discimination-against.html">before</a>. This is the very kind of thing I was talking about in that post. Legislation that requires good short term memory from its citizenry is necessarily discriminatory against people on the spectrum. Worse, it ends up resulting in the harassment of people who already feel <a href="http://anintenseworld.blogspot.com/2016/06/imposing-on-me-all-time.html">imposed upon</a> by everyone. Unless the person goes to court and points out that they are on the spectrum and that they have short term memory problems as a result, a fine is likely to be imposed. To impose a fine on someone with autism because they forgot to do something is the same as fining them for having autism.<br />
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So today I had to go to court. When the judge asked me if I was going to plead guilty, not guilty, or no contest, I said, "Well, let me explain my situation first . . ." I then proceeded to tell her that I had Asperger's and that meant that I had short term memory problems that affected my ability to remember to do things like put in requests. I then asked her, "What is the purpose of my being here? The purpose of imposing a fine is to ensure that I will remember next time, right? But imposing such a fine on me won't have the desired outcome, because I simply cannot remember."<br />
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The prosecutor suggested that my cased be dismissed "in the interest of justice."<br />
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The judge agreed, but said next time I would be fined.<br />
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I was hardly going to argue with her, though the problem nevertheless remains. However, since I did in fact go read the ordinance (which oddly left out the number of warnings and any mention of a fine), there is a certain probability that my exceptional long tern memory will aid my short term memory and I'll actually remember.<br />
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To avoid an absurdly high $280 fine, let's certainly hope so.<br />
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So the good news is that justice in this case prevailed. If I forget again, it won't. And worse, how many people are out there on the spectrum who consistently forget such things and find themselves fined? My guess is very few if any have enough self-understanding and presence of mind to make the argument I did in court today. As a result, there are likely hundreds of thousands if not millions like me who are being fined for having autism. And that is hardly in the interest of justice.Troy Camplinhttp://www.blogger.com/profile/16515578686042143845noreply@blogger.com2