Thursday, October 18, 2007

Open Thread

Discuss anything that's on your mind, or post information of interest.

14 comments:

  1. Agh! The timestamps on the hub list have changed twice today and so I can't list the posts by post date/time!

    I hope there is only some maintenance going on, otherwise I might be tempted to think the system is malfunctioning (or worse.)

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  2. I understand the Hub is changing hands, and that's probably what's going on at the moment. They'll get it fixed. It's pulling the RSS feeds. It's just not sorting by publication date apparently.

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  3. Greetings, Joseph, it is me, Liz, from I Speak of Dreams.

    I have 3 kids, all of whom are neurotypical. Starting when they were small, we did a lot of outdoor adventures. Because they were NT,it was relatively non-difficult for me to teach [instead of 'if you are lost'] "If mom and or dad wander away, sit down and hug the nearest vegetation (bush or tree). Wait for mom or dad to wander back."

    Kristina Chew's coverage of the Jacob Allen story made me think: "how would you teach the same heuristic to a neurodiverse child?"

    I still don't know.

    Also, often the most efficient way to find a missing person is by dogs tracking scent. If your child is fearful of dogs...well it complicates the situation. How do you teach a child that some dogs are to be welcomed (as in, scent search dogs, should the child have wandered away from the parents)?

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  4. Re: Hub

    Yes, they're aware of the date sort problem and it's slated to be fixed ASAP. Just some minor glitches is all.

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  5. Hi Liz. On your first question, I'd say, presume competence and tell the child that anyway. However, yes, you have to be more careful with an autistic child, the way you'd be more careful with a typical young toddler.

    There's also this kind of thing which might help some parents have peace of mind.

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  6. My 8 yrs old autiztic daughter talks everytime as if narrating the activity of the whole day. She would talk aloud as her teacher and switching between the class mates as well as family members.Is there a term for this phenomenon.
    She is not addressing anyone, she is just narating what happened the whole day.

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  7. Sounds like she's hyperverbal with delayed echoing. I haven't encountered a description like that in the literature, but I personally know a local autistic little girl who one time repeated an inappropriate interaction between a teacher and another autistic student, verbatim; which was very helpful.

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  8. To the parent of the child who repeats what happened during the day but is talking to no-one in particular.
    It sounds as if your daughter is 'scripting'.
    Many autistic kids do this...there are actually ways to utilize this ability to recall events although the way you would do this is different for each kid.
    Jake did this when he played 'school' with his sisters. he would be the teacher and just go over verbatim things his teacher would say. eventually he started to add variation and now he no longer does it really.
    He also use to do this during the day using lines from cartoons. He did use them in the appropiate situations though...he actually still does this a little.
    Did you ever hang around fans of Monty Pythons Flying Circus? they do this all the time!!!
    I would see if you could somehow talk to her about what she is talking about...if she is scripting i would ask her questions in hopes of getting her to enter into a dialogue of what it is she is remembering and repeating.

    Phil

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  9. I am the parent of a 2yr 8 mo old boy who has PDD-NOS. I love him the way he is, but also want to do the best job I can to educate him in the best way for him. I'm at a loss of what to do in order to do this.

    There are tons of books out there about ABA etc, but none I know of that address the best possible scenario for kids like him.

    I don't want to discount the value of his therapies, but I'm not sure if they help or do anything at all. He gets speech, occupational and special instruction/social therapy. How do I find out HOW to be the best parent of this incredible kid?

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  10. Nessa: There are no easy answers or guarantees. That of course doesn't mean that parenting is irrelevant or that there's nothing you can do to help a child.

    The science has huge gaps as you can imagine (which people try to fill with anecdotes, which in turn can be misleading.) There are no adult outcome studies that say so and so is clearly what you need to do. Except, perhaps, that institutionalization is nearly a guarantee of a dismal outcome. I've written about what the science tells us.

    One particular recommendation I would make is to read about these techniques Dr. Gernsbacher writes about, which seem positive and respectful, while at the same time backed by randomized trials, unlike a lot of the standard stuff.

    If you're looking for parental accounts, I'm sure you will find many on the web. Let me direct you to a couple by parents who share a similar bias to mine and who have grown kids: jypsy, mom26children. I know other parents with grown kids, but they prefer to keep their personal experiences about such matters mostly private.

    You might also want to read what other parents and persons on the spectrum have to say over at the Autism Hub.

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  11. My 12-yr-old son is into narrating, too. It's very amusing sometimes, especially when he talks about what he's doing in the third person.

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  12. i know a lot of autistics who narrate. Mainly lines from their favorite movies. I narrate to myself when nobody else is around. and i have a secret imaginary friend that responds to everything i say or do. he's like the other side of me, giving myself criticisms.

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  13. I found a website that sells very good, relatively inexpensive headphones that block out a lot of noise. If you are overly sensitive to sound you may be interested in these Extreme Isolation Headphones. I bought the speakerless headphones for $29 that just block sound. They are really comfortable and work really well.

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  14. (This was posted once but to a dead thread. My apologies to anyone who already saw it there. ( 3//18/2008



    To whom it may concern:


    The purpose of this writing is to offer a new (at least I think it's new) explanation for the cause of autism. Were it true, the idea would also explain why the number of newly diagnosed cases has been increasing in recent years. I will present the idea as briefly as possible and without offering much evidence. The evidence is both vast, and easily obtainable, and my intent here is merely to present the idea, and then let the reader decide if any portion of it is plausible enough to merit further study. As a lay person, I really have no idea. I do know, that if I remain quiet while new cases are continually diagnosed, and later find out that my ideas were accurate, I would have trouble living with myself, knowing that I didn't even try to make a difference. So, to ease my conscious, here are my thoughts:

    After reading the book by Dr. Michael Lyons, 42 Days to a New Life, I began thinking about what I had just read, and how it related to Autism. As a layperson with no association to autism, I'm not sure from where it arose, but from somewhere, came an idea about a potential causal relationship between Omega 3, the MMR vaccine, and the development of autism in children.

    The book explains that both Omega 6 and Omega-3 fatty acids are considered essential to human health and cannot be manufactured by the body. For this reason, they must be obtained from food or supplements. For many reasons that are detailed in the book but that I will not get into here, the ratio of Omega 6 to Omega 3, in the average American diet, has been increasing steadily since the 1950's. Although no one knows for sure what the ideal ratio is, the generally accepted correct ratio for optimum health, ranges from 10:1 to 4:1, and many informed persons are now recommending 1:1. (This is the ratio that most likely approximates that of early humans.)

    Since most of us consume an abundance of Omega 6 in our diets, it is usually not necessary to supplement it. Omega 3, on the other hand, probably should be supplemented, but for most of us, it isn't. Thinking about this, I began to wonder. . . . what would happen if the MMR vaccine were administered to a child who was deficient in Omega 3? I began to read more.

    One of the primary functions of Omega 6 is to initaite immune inflammatory responses. Omega 3 on the other hand, is responsible for halting the response. Without understanding all of the chemistry involved in turning these fatty acids into LNA and DHA and so forth, I think it is entirely possible to conclude that vaccinating with MMR, in children who are deficient in Omega 3 (and its fatty acid derivatives ANA and DHA) is fool hardy, especially since it is this fatty acid, that will be needed to halt the immune response that the triple dose will create.

    At the exact time when a child's brain is developing, and needs an abundance of both Omega 6 and Omega 3 to build and grow, we inoculate and thereby initiate immune responses that will require the body to send what ever stockpiles of these fatty acids it has, to areas outside of the brain. I imagine that with an ample supply of omega 6 to initate the inflammatory processes, the immune system could successfully build an arsenal to fight Measles, Mumps, and Rubella, but that once begun, the Omega 3 needed to halt the response, is unavailable. Since the body cannot synthesize the protein, it might use what ever is available to stop the immune response, while ignoring the needs of a developing brain. Another scenario that seems plausible to me, is that a cascade-like situation develops; with any supply of Omega 3 that becomes available, being immediately diverted and used by the body to halt the immune response, leaving the developing brain to starve for months, or possibly years to come.

    Once I started thinking about this possibility, and began to investigate by reading online, I found a plethora of evidence to support the idea and very little that would run contrary to it.

    I read what I could find about mother's milk and infant formulas. I found that while, mother's milk usually has a high ratio of Omega 3 to Omega 6 (It varies depending on what the mother is eating and/or supplementing.), infant formulas never even tried to replicate the ratio found most often in nature. In spite of the recommendation of the World Health Organization in 1994, that the makers of baby formula begin adding DHA and ANA (derived fatty acids), it wasn't until 2003 that such formulas became available, and then it was only offered in two of the many formulas available. Even today the FDA has not mandated the addition of these fatty acids, and they are currently found only in a few of the more expensive formula choices.

    I also found that parents of autistic children have been networking and exploring the possibility that a correlation exists between breastfeeding and autism. Here is one example I found on and autism blog (http://autismnaturalvariation.blogspot.com/2006/09/breastfeeding-and-efas.html):

    “Breastfeeding, Infant Formula Supplementation, and Autistic Disorder: the Results of a Parent Survey.

    Schultz ST, Klonoff-Cohen HS, Wingard DL, Akshoomoff NA, Macera CA, Ji M, Bacher C.

    ABSTRACT: BACKGROUND: Although autistic disorder is associated with several congenital conditions, the cause for most cases is unknown. The present study was undertaken to determine whether breastfeeding or the use of infant formula supplemented with docosahexaenoic acid and arachidonic acid is associated with autistic disorder. The hypothesis is that breastfeeding and use of infant formula supplemented with docosahexaenoic acid/arachidonic acid are protective for autistic disorder. METHODS: This is a case-control study using data from the Autism Internet Research Survey, an online parental survey conducted from February to April 2005 with results for 861 children with autistic disorder and 123 control children. The analyses were performed using logistic regression. RESULTS: Absence of breastfeeding when compared to breastfeeding for more than six months was significantly associated with an increase in the odds of having autistic disorder when all cases were considered (OR 2.48, 95% CI 1.42, 4.35) and after limiting cases to children with regression in development (OR 1.95, 95% CI 1.01, 3.78). Use of infant formula without docosahexaenoic acid and arachidonic acid supplementation versus exclusive breastfeeding was associated with a significant increase in the odds of autistic disorder when all cases were considered (OR 4.41, 95% CI 1.24, 15.7) and after limiting cases to children with regression in development (OR 12.96, 95% CI 1.27, 132). CONCLUSIONS: The results of this preliminary study indicate that children who were not breastfed or were fed infant formula without docosahexaenoic acid/arachidonic acid supplementation were significantly more likely to have autistic disorder. "

    There are many other ways that this could be researched to attempt to prove a statistical connection, but the only definitive way to determine if this idea has merit, is to conduct medical research.

    I am sending this to Dr. Michael Lyons, as he is the person who inspired my thought process, with his book, 42 Days to a New Life. I am also posting it to several blogs for parents of autistic children, sending it to the CDC, the NIH Autism Research Network, several local doctors, and anywhere else that I think may have an interest. My hope is that if the idea has merit, someone will eventually begin the medical research needed to make a final determination.

    Finally, for anyone who is still reading, if you deem this just the ramblings of an uninformed, uneducated layperson, I apologize for consuming this bit of your time.

    Sincerely,




    Terry Adamik
    380 Island Blvd.
    Fox Island, WA 98333
    253 238-1413
    lupette@comcast.net

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