MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'autism parents'. Sat, 03 Sep 2011 02:48:47 +0100 http://www.medworm.com/index.php?rid=1833186&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fwhat-would-you-have-done-what-would-you-do-today%2F What would you have done if a prenatal test for autism had existed when you were expecting, and your child had tested positive for autism?  More importantly, what would you do today, knowing what you now know about autism and being an autism parent, if you were expecting and learned that your child would be autistic?  A comment to my last post from Jen and an article from Susan Senator last year give some insight into the question from an autism mom’s perspective. From Jen: I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped my mind around. (needless to say, I was also completely clueless abou... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1833186 Fri, 26 Sep 2008 22:10:58 +0100 1833186 http://www.medworm.com/index.php?rid=1829148&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fprenatal-testing-and-disability-rights%2F An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic.   Of course, here in the real world we aren’t at that point - yet.   But we’re getting there. Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question.  I’ve given this some thought before - I posted the following as To hear or not to hear, is that the question? in September 2006 - but it’s a big question deserving a bit more thought. = = == === ===== In the world o... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1829148 Fri, 26 Sep 2008 04:12:01 +0100 1829148 http://www.medworm.com/index.php?rid=1806277&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fis-your-sen-or-rep-attending-rep-maloneys-vaccine-autism-meeting%2F As the folks at Age of Autism have pointed out, Rep. Carolyn Maloney (D-NY) is hosting a special briefing next Wednesday (24 September 2008) for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  I took their advice (kind of) and sent my Senators and Congressman a quick note about the meeting: Dear …  , On Wednesday 24 September, Rep. Carolyn Maloney (D-NY) is hosting a special briefing for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  As the parent of an autistic son, now 17, I’m asking that you not spend the valuable time of you or your staff at this meeting. As you may have guessed, I don’t subscribe to the belief that vaccines, or anything in them, cause... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1806277 Thu, 18 Sep 2008 22:23:21 +0100 1806277 http://www.medworm.com/index.php?rid=1802697&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2F%25e2%2580%259cmen-must-attend-iep-meetings%25e2%2580%259d-reprint%2F I originally posted this over two years ago, and like my last post thought it would be worthwhile to reprint it as many parents are preparing for IEPs. = = == === ===== “Men must attend IEP meetings.” This advice comes from Charles Fox at the Special Education Law Blog in a Father’s Day post discussing the role of fathers in the advocacy process. A short excerpt: Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that “men must attend meetings.” [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.What was lost in translation was not that women are incompetent advocates because nothing c... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1802697 Wed, 17 Sep 2008 11:11:37 +0100 1802697 http://www.medworm.com/index.php?rid=1798133&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fsun-tzu-and-the-art-of-the-iep-reprint-2%2F I’ve posted this a couple of times before, but it seems worthwhile to post again as many of us enter IEP season.  (originally posted last August) = = == === ===== As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.) The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite: Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1798133 Tue, 16 Sep 2008 13:11:36 +0100 1798133 http://www.medworm.com/index.php?rid=1794404&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fdifferent-no-doubt-but-disabled%2F In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement.  One of those issues are the questions:  Is autism a disability or a difference? Can it be both? More than just an academic debate, the answers to these questions have very definite real world consequences.  Disabilities are covered by various laws, policies, etc. etc..  Differences, on the other hand, are not.  This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his issues were more related to not having an official diagnosis, the situation presents a good point of comparison. If treated as a disability, supported by the proper diagnosi... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1794404 Tue, 16 Sep 2008 02:01:40 +0100 1794404 http://www.medworm.com/index.php?rid=1785914&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F09%2Fautism-and-grief%2F I am not grieving, despite the concern (?) from CS in a comment on my most recent post.  (Nor am I simply in denial as I’m sure some will tell me about my thoughts on autism and raising an autistic child.)  I have written about grief and autism before, though, and this seemed like a good time to dust that post off and repost it. From April 2006, Autism and the 5 Stages of Grief: = = == === ===== For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don’t actively educate themselves about autism before the diagnosis - let’s face it, no one thinks it can happen to them - most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are ab... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1785914 Fri, 12 Sep 2008 03:40:52 +0100 1785914 http://www.medworm.com/index.php?rid=1739130&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F08%2Fwhat-does-it-mean-to-be-me%2F This is the second of three posts of excerpts from Elizabeth Moon’s novel The Speed of Dark. (Part one - How normal are normal people?) In this excerpt, Lou is considering what it means to be “Lou”, and how he would be different as an adult if he had been different when he was younger. If I had not been what I am, what would I have been? I have thought about that at times. If I had found it easy to understand what people were saying, would I have wanted to listen more? Would I have learned to talk more easily? And from that, would I have had more friends, even been popular? I try to imagine myself as a child, a normal child, chattering away with family and teachers and classmates. If I had been that child, instead of myself, would I have learned math so easily? Would the ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1739130 Thu, 28 Aug 2008 11:37:33 +0100 1739130 http://www.medworm.com/index.php?rid=1655455&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F07%2Fwhat-can-parents-do-to-help-the-cause-of-autism-advocacy%2F My recent posts, and your comments to them, has got me thinking about the following question: Aside from being a good parent, advocating for our autistic children when they are young, and helping them learn how to advocate for themselves as they get older, what are some things that parents can do advocate for autistics in general? I know what the basic message is, but what I’m not sure of is how best to get that message out; to friends, family, local media, educators, etc etc. I’m going to be “off the grid” for the next 10 days, so I won’t respond to anything right away. But I’m looking forward to reading your ideas and suggestions. (Source: 29 Marbles) 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1655455 Fri, 25 Jul 2008 11:37:05 +0100 1655455 http://www.medworm.com/index.php?rid=1652327&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F07%2Fjust-a-plain-ordinary-loving-proud-parent%2F I started writing about autism, specifically about being an autism parent, just over three years ago. One of my goals was to provide information that would be useful for parents who have recently received a diagnosis of autism for their child. This post is my attempt to give you, as a parent of a newly diagnosed autistic child, an idea of what you will likely find as you try to understand what that diagnosis means to you and your child. Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean. How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1652327 Thu, 24 Jul 2008 11:29:23 +0100 1652327 http://www.medworm.com/index.php?rid=1637768&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F07%2Fautism-neurodiversity-and-parenting%2F After over three years of blogging about autism, I’ve finally found the right words to express my feelings, as a parent, about autism and neurodiversity. I admire and appreciate the important and necessary work of Jim Sinclair for both autism, and in general for people with disabilities. It is an extremely well-written and concise expression of rights of those with disabilities, the folly of many parents in missing the individual beauty and development of their own child in the constant misguided comparison with an incomparable standard, and the need for public accommodation and acceptance of autism as a different way of being. I myself have used that expression, “a different way of being”‘ in conversation, and it describes autism well, without defining it as less-t... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1637768 Fri, 18 Jul 2008 22:06:21 +0100 1637768 http://www.medworm.com/index.php?rid=1543195&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F06%2Fenjoying-the-scenery-redux%2F A consistent theme in my writing here is that parenting an autistic child is, first and foremost, nothing more than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent. In response to Steve D’s call to revisit a favorite post I am reposting Enjoying the Scenery, which I originally posted in February 2006. I don’t know if this is my absolute favorite, but it is right there at the top. = = == === ===== Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1543195 Tue, 24 Jun 2008 00:22:22 +0100 1543195 http://www.medworm.com/index.php?rid=1380531&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F04%2Fsun-tzu-and-the-art-of-the-iep-reprint%2F With IEP season upon us (at least for us), I thought it would be worthwhile to re-post this, which I originally posted last August. The text has been altered slightly based on Joe’s recommendations to the original. = = == === ===== As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.) The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite: Know the enemy and know yourself; in a hundred battles you will never ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1380531 Fri, 18 Apr 2008 00:28:02 +0100 1380531 http://www.medworm.com/index.php?rid=1371935&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F04%2Fis-this-neglect-or-just-good-parenting%2F What would you think if your friend/neighbor/sibling told you that they had left their 9 year old son at a department store in mid-town Manhattan, by himself, because “he had been begging for me to please leave him somewhere, anywhere, and let him try to figure out how to get home on his own”? Would you call Child Protective Services, or would you say “good for you”? Would you ever do something like that? After you’ve had a chance to think about it for a second, check out the essay Why I Let My 9-Year-Old Ride the Subway Alone by Lenore Skenazy (also available on her new blog, Free Range Kids). Was I worried? Yes, a tinge. But it didn’t strike me as that daring, either. Isn’t New York as safe now as it was in 1963? It’s not like we’re living in downtow... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1371935 Mon, 14 Apr 2008 23:43:07 +0100 1371935 http://www.medworm.com/index.php?rid=1366677&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F04%2Fthey-shoot-horses-dont-they%2F The anecdote The Family Doctor , published by Julie Obradovic on Age of Autism a couple of months back, is a well told story of how she finally succeeds in converting her brother, a pediatrician, to her understanding that vaccines are bad and likely a cause for autism. If you are new to the question of autism and its causes, and come across this story early on in your search for answers, chances are it might be pretty influential. But something has been bugging me about the story since I first read it. I couldn’t quite put my finger on it, so I haven’t written about it until now. It was a discussion I had with Autistic Bitch From Hell in the comments to my recent post A View From the Middle that made me realize what was so troubling to me about the story. Here are Obradovic&#82... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1366677 Fri, 11 Apr 2008 11:51:00 +0100 1366677 http://www.medworm.com/index.php?rid=1362421&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F04%2Fwhose-decision-is-it%2F A couple of weeks ago, I was asked to give a short talk on autism. Here’s a rough transcript of what I said. A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right? (general murmur of agreement from the small audience) I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned. If the child study team that gave us the diagnosis had asked that question right after giving us the diagnos... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1362421 Thu, 10 Apr 2008 04:13:08 +0100 1362421 http://www.medworm.com/index.php?rid=1347372&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2Fautism.gbrettmiller.com%2F2008%2F04%2Fa-view-from-the-middle%2F I had lunch with an old friend recently, and the topic of conversation wound its way to autism. I, of course, am the parent of an autistic son. As it turns out, his nephew is also autistic. He wanted to understand autism, and I wanted to help him understand. But I didn’t know where to start. Sure, there are many angles from which to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in. As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here). To ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1347372 Thu, 03 Apr 2008 04:15:00 +0100 1347372 http://www.medworm.com/index.php?rid=1312410&cid=t_105129_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F253927886%2F Yes, I do mean “artistic”: The Artistic Spectrum is the name of an exhibition of artwork of young people aged 10-21 with an autism spectrum disorder. The exhibition will be held at the Jewish Community Center in Manhattan. Other events will include an Opening Reception to meet the artists (April 2); a Family Art Day (April 6); and a Lit Café (April 10, 7-9pm) featuring writers on the autism spectrum. Amy Gravino, Jason Ross, Cliff Schumacher, and Leigh Silver will read; Jacob Artson will read via a live feed from LA. My friend MothersVox and I will also read. And, on April 16, comedian Elijah Wapner will perform and the MTV “True Life” series and Autism: The Musical will be screened, and there will be a Q & A session with director Tricia Regan. Contact Beth Ro... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1312410 Tue, 18 Mar 2008 23:29:03 +0100 1312410 http://www.medworm.com/index.php?rid=1199849&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2008%2F02%2Findulge-your-kids-passion-and-build-on.html Consider this opening paragraph from the book Strengths Finder 2.0:At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don't have natural talent with numbers, you're still forced to spend time in that area to attain a degree. If you're not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.Any autism parent - any parent, for that matter - will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn't mean that is what we should be doing.The following ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1199849 Mon, 04 Feb 2008 12:15:00 +0100 1199849 http://www.medworm.com/index.php?rid=1190000&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2008%2F01%2Fnot-in-my-backyard-vaccines-autism-and.html In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not "an acceptable loss in the war against TREATABLE viruses" (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)An anonymous commenter resp... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1190000 Thu, 31 Jan 2008 05:14:00 +0100 1190000 http://www.medworm.com/index.php?rid=1159500&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2008%2F01%2Fand-verdict-is.html ... guilty on all counts.(c) by Brett Miller 2005-2008 Except where otherwise noted, this work is licensed under a Creative Commons Attribution 2.5 License. (Source: 29 Marbles) 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1159500 Thu, 17 Jan 2008 23:00:00 +0100 1159500 http://www.medworm.com/index.php?rid=1156767&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2008%2F01%2Fwhile-we-wait-for-verdict.html In May 2006, 3 year-old Katie McCarron was killed by her mother, Karen McCarron, who is on trial for the murder of her autistic daughter. The case is now with the jury, who have four options to choose from (guilty, not guilty, guilty but mentally ill and not guilty by reason of insanity) for each of the four counts McCarron faces. See Autism Vox for Kristina Chew's excellent coverage of the trial for more info. I'm sure there will be plenty of analysis of the verdict once it comes in, the arguments in the case, and what it means to be autistic and the parent of an autistic child. But for now I'd like to repost something I put up in May 06, not long after Katie was killed. It was also around that time that I finally watched the Autism Speak's video, Autism Every Day. = = == === ===== ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1156767 Thu, 17 Jan 2008 03:29:00 +0100 1156767 http://www.medworm.com/index.php?rid=1119250&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F12%2Fautism-and-god.html Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God's Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.Here's how Ginger describes the series:Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most expe... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1119250 Thu, 27 Dec 2007 18:40:00 +0100 1119250 http://www.medworm.com/index.php?rid=1116697&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F12%2Fautism-book-clubs-on-shelfaricom.html One of the various reasons I finally got around to posting my review of Portia Iverson's Strange Son was my signing up for an account at Shelfari.com, a social networking site to connect those who still engage in the fading activity of reading. As I was adding books to my shelf I wanted to add a review of at least one book, so I dusted off that review and posted it to Shelfari, as well as here (where it would, admittedly, reach a bit larger audience).One of the other things that Shelfari provides is the ability to create groups, what seem to me to essentially be a virtual book club. I created one, Books by Autism Parents and Autistics, to provide a forum to discuss, well, books by autism parents and autistics. So far, the group is just me. I'd love to have some company. (hint hint ;-)On a... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=1116697 Wed, 26 Dec 2007 04:16:00 +0100 1116697 http://www.medworm.com/index.php?rid=979212&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F10%2F25%2Fjenny-mccarthy-responding-to-criticism%2F First, an apology. My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=979212 Thu, 25 Oct 2007 23:55:16 +0100 979212 http://www.medworm.com/index.php?rid=964562&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F10%2Fstarting-gun.html This is the last of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.- - -- --- -----One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70's and early 80's) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd ("Welcome to the Machine" was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point. I've been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song "Time" is... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=964562 Fri, 19 Oct 2007 04:12:00 +0100 964562 http://www.medworm.com/index.php?rid=964563&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F10%2Fautism-is-trait.html This is the third of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.- - -- --- -----Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, "Autism is a trait, not a debilitation." Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).He is on posters, pamphlets and television screens all around the St. Lou... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=964563 Fri, 19 Oct 2007 03:57:00 +0100 964563 http://www.medworm.com/index.php?rid=944595&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F10%2F11%2Fthe-costs-of-autism%2F I am familiar with two studies that make a serious attempt to estimate the costs of autism - one in the USA and one in the UK. These figures look quite alarming: 3.2 million US dollars or 2.4 million UK pounds over a person’s lifetime. The UK figure is used to argue for an increase in our low level of [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=944595 Thu, 11 Oct 2007 23:46:09 +0100 944595 http://www.medworm.com/index.php?rid=934023&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F10%2F08%2Fautism-news-beat-a-round-up%2F NEW BLOGS FOR OLD There is a new blog on the block. Autism News Beat opened with this. “I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=934023 Mon, 08 Oct 2007 07:10:34 +0100 934023 http://www.medworm.com/index.php?rid=892850&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F09%2F22%2Flandmark-parental-choice-ruling-over-autistic-boy%2F  This comes from the Foundation f0r People with Learning Disabilities website. Thanks to Norman from the NAS for sending me the link. In the UK we often get inter-agency disputes over funding issues. Health, education and social services are all funded out of the public purse but they guard their budgets ferociously. I recall a [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=892850 Sat, 22 Sep 2007 20:10:14 +0100 892850 http://www.medworm.com/index.php?rid=776121&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F08%2Fsun-tzu-and-art-of-iep.html As a young Army officer, I read Sun Tzu's Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu's demonstration of leadership ability using the Emperor's concubines as soldiers.)The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.Of course, this may need some translation... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=776121 Fri, 03 Aug 2007 03:52:00 +0100 776121 http://www.medworm.com/index.php?rid=768937&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F07%2Fautism-dads-and-ieps.html Last summer in the post "Men must attend IEP meetings", I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox's quote:Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that 'men must attend meetings.' [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the f... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=768937 Tue, 31 Jul 2007 01:07:00 +0100 768937 http://www.medworm.com/index.php?rid=692622&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F06%2F23%2Fnew-scientist-and-the-omnibus%2F New Scientist has published an interesting commentary on the Autism Omnibus  proceedings that are taking place in the United States Court of Federal Claims.  They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=692622 Sat, 23 Jun 2007 23:36:46 +0100 692622 http://www.medworm.com/index.php?rid=688631&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F06%2F21%2Fvaccines-autism-and-perception-of-risk%2F This week’s New Scientist contains the first major discussion of the Autism Omnibus Proceedings that I have seen in the UK media. There are a few minor inaccuracies. For example the Omnibus is not just about thimerosal. There are three theories of general causation proposed by the Petitioners Steering Committee: thimerosal; MMR; thimerosal and MMR [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=688631 Thu, 21 Jun 2007 23:45:40 +0100 688631 http://www.medworm.com/index.php?rid=683206&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F06%2F20%2Fautism-omnibus-a-disaster-for-the-families%2F After 5 years of delays and legal wrangling the Autism Omnibus proceedings have finally begun. Arthur Allen has blogged about the trial and in one of his posts asks the question, Are they seriously trying to win this case?  This is a good question. There are nearly 5000 children involved in the Autism Omnibus proceedings [...] (Source: Action For Autism) Action For Autism blogs http://www.medworm.com/rss/comments.php?id=683206 Wed, 20 Jun 2007 00:02:46 +0100 683206 http://www.medworm.com/index.php?rid=601789&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F05%2Ftrampoline-and-tumbling.html It may not show here, but I have been giving quite a bit of thought to autism and related concerns lately (it is, after all, IEP season). I've not written here, though, mainly due to numerous other commitments over the last couple of months. One of those commitments has been setting up the new blog, The Tramp and Tumble Blog. My younger son is on the St. Louis Elite team, and the National Championships are quickly approaching. As much as we love it, though, Trampoline and Tumbling is not well known as a competitive activity (unlike rival activities Gymnastics [which TnT is actually a subset of] and cheerleading), so I've been working with the coach at St. Louis Elite to help spread the word. Tramp and Tumble is a first step.Trampoline has long been a part of our household. We found, as man... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=601789 Tue, 08 May 2007 22:17:00 +0100 601789 http://www.medworm.com/index.php?rid=536611&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F04%2Fits-odd-life-but-good-one.html Parents of the Autistic Weigh Lifelong Care Options on this morning's Morning Edition on NPR discusses many of the things that I've discussed here before: the need for estate planning and trusts, thoughts on how your adult child will live, potential interactions with law enforcement.What struck me the most about the story, though, was how autism was portrayed and - more importantly - how the parents in the story have responded to life with autism. The quote I used for the title of this post - "It's an odd life, but a good one" - pretty much sums it up.Finally, a story about autism in the national media that doesn't focus on the doom-and-gloom, woe-is-me (I?), "my child is gone" view of autism that is so prevalent in the media today. Could this be the start of a new trend?Let's hope so. (c... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=536611 Wed, 11 Apr 2007 11:42:00 +0100 536611 http://www.medworm.com/index.php?rid=530925&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F04%2Fevent-notice-autism-101-in-st-louis.html Autism 101, a panel discussion about autism, will be at 7 p.m. April 18 at the Logos School, 9137 Old Bonhomme Road, Olivette. [Flyer (MS Word)]The panel will explore topics such as relationship development intervention, applied behavioral analysis, neurology and sensory and feeding issues associated with autism.Among speakers will be Dr. Garrett Burris of Child Neurology Associates, Colin Peeler of Behavior Solutions, Sheree Behrndt of Sensory Solutions and Sue Lindhorst of Speech Language Services. Autism Speaks and Missouri Families for Effective Autism Treatment will sponsor the event.Those who want to attend must register by Wednesday. To register, click on Upcoming Events on the website, www.autismwalk.org/stlouis. For more information, call 314-989-1003. (c) by Brett Miller 2005-20... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=530925 Mon, 09 Apr 2007 16:48:00 +0100 530925 http://www.medworm.com/index.php?rid=486970&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F03%2F16%2Flanguage-culture-and-autism%2F Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation. I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe. Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ langua... Action For Autism blogs http://www.medworm.com/rss/comments.php?id=486970 Fri, 16 Mar 2007 23:32:25 +0100 486970 http://www.medworm.com/index.php?rid=486971&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F03%2F11%2Freasons-to-be-cheerful%2F AUTISM IN CANADA  Regular readers of Michelle Dawson’s blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas,  to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.   These self appointed ‘autism advocates’ argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline f... Action For Autism blogs http://www.medworm.com/rss/comments.php?id=486971 Sun, 11 Mar 2007 23:53:57 +0100 486971 http://www.medworm.com/index.php?rid=486990&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F02%2Fdiagnosis-autism-nothing-new-on-60.html A quick follow up to 29 Marbles: Autism on 60 Minutes - 18 Feb 07 . My first thoughts after watching the 60 Minutes piece Diagnosis: Autism on Sunday night was, "Wow, this was a non-event." Maybe it's just me, and the fact that over the past year I've been soaking in just about every autism story, theory, etc and reading several autism related books, but the show didn't seem to shed any new light on anything. Of course, if I were the parent of a recently diagnosed child, or (gasp) the parent of a 6-12 month old who wasn't responding when I called his name, it would have been a different story. But what exactly would I have learned? (c) by Brett Miller 2005-2007 Except where otherwise noted, this work is licensed under a Creative Commons Attribution 2.5 License . (Source: 29 Marbles) 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=486990 Wed, 21 Feb 2007 01:09:00 +0100 486990 http://www.medworm.com/index.php?rid=486991&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F02%2Fevery-child-is-unique.html Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this. (c) by Brett Miller 2005-2007 Except where ... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=486991 Fri, 16 Feb 2007 12:17:00 +0100 486991 http://www.medworm.com/index.php?rid=486976&cid=t_105129_133_f&fid=35081&url=http%3A%2F%2Fmikestanton.wordpress.com%2F2007%2F02%2F11%2Frett-reversal-and-neurodiversity%2F Rett Syndrome is unusual amongst autistic spectrum disorders for two reasons It is far more common in girls than in boys. We know what causes it - a mutation of the gene MECP2 on the X-chromosome. Because it is genetic, Rett parents have not been chasing cures like some autism parents. This has made Rett syndrome a relatively quack free zone, so far. On Thursday a team of researchers led by Dr. Bird of the University of Edinburgh announced that they had successfully activated the MECP2 gene in mice using Tamoxifen and that this had led to a reversal of Rett like symptoms and an improvement in brain function. Kev and Kassiane have both blogged their concerns that the purveyors of autism quackery will try to exploit this and I share their concerns. Fortunately Dr. Bird is not only a very ... Action For Autism blogs http://www.medworm.com/rss/comments.php?id=486976 Sun, 11 Feb 2007 17:02:17 +0100 486976 http://www.medworm.com/index.php?rid=487000&cid=t_105129_133_f&fid=35082&url=http%3A%2F%2F29marbles.blogspot.com%2F2007%2F01%2Faction-for-autism.html Mike? Hmm, that's a new person leaving comments. Good comments. I wonder what his blog looks like. Action For Autism, nice name. Wow, this is good stuff. He's been blogging for how long, over a year? Over 27,000 hits? And he's written some autism books? Have I been sleeping, or what?That was my train of thought as I, well you can tell what I was doing.It never ceases to amaze me that there is so much good stuff out there on autism, and I am continually frustrated that I'll never be able to find it all (and even if I did I'd never get to read it all). If you've not seen Mike Stanton's blog Action for Autism, do yourself a favor and check it out. (c) by Brett Miller 2005-2007 Except where otherwise noted, this work is licensed under a Creative Commons Attribution 2.5 License . (Source: 29 M... 29 Marbles blogs http://www.medworm.com/rss/comments.php?id=487000 Thu, 04 Jan 2007 23:00:00 +0100 487000