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Hyper-wired: Musings of a Christian on the Autism Spectrum 2015-05-04

The world through the eyes of a Christian on the autism spectrum...

  1. Bookmaker

    Bookmaker Well-Known Member

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    Bookmaker submitted a new resource:

    Hyper-wired: Musings of a Christian on the Autism Spectrum - The world through the eyes of a Christian on the autism spectrum...

    Read more about this resource...
     
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  2. Aspergirl4hire

    Aspergirl4hire Mage, Sage, Revolutionary

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    EDIT: I question the value of the resource because its science is skimpy and because a resource I do respect, ASAN, also seems to question it.

    When I googled for more information, this information bothered me (red bits are the things I noticed) from Sfari.org:

    "The Markrams describe autism as a constant state of feeling “hungover and jetlagged” and say that it is characterized by extreme fear reactions.

    Indeed, they frame all of the ‘capabilities’ [of autism] as problematic symptoms that need to be tempered before an individual can function meaningfully and demonstrate enhanced abilities.By contrast, other models, such as the ‘enhanced perceptual functioning’ model, describe genuine skills and superior abilities seen in autism10, 11. [10, 11 are specific citations to peer-reviewed literature].

    So how does the intense world theory affect autism treatment? In their publications, the researchers state that their claims “have to be substantiated in systematic and controlled experiments on human subjects” before others make any predictions regarding treatment2.

    However, in contrast to this expressed caution, in the popular press the Markrams call for a dramatic change in the way that clinicians and researchers treat children with autism.

    In one such interview they said, “In the early phase of the child’s life, repetition is a response to extreme fear. The autist perceives, feels and fears too much. Let them have their routines, no computers, television, no sharp colors, no surprises. It’s the opposite of what parents are told to do. We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.”

    This is a worrying throwback to the days when researchers implausibly linked parental inaction to autism severity ("cold mother"--A4.). What’s more, this type of statement at once creates anxiety about having missed the window of opportunity, and unreasonably high expectations. We also note a concern raised by Ari Ne’eman, president of the Autistic Self Advocacy Network, that we should not link the worth of a child with autism to whether he or she has special abilities.

    Until researchers have tested the theory appropriately, we urge caution. We need to verify this theory before it can shape our perception and treatment of autism. Once this is done, we may well find ourselves with an intensely interesting proposal. For now, we remain intensely worried.

    Anna Remington is lecturer in cognitive science at the Centre for Research in Autism and Education at the Institute of Education in London. Uta Frith is emeritus professor of cognitive neuroscience at University College London."

    EDIT: End of quoted material from sfari.org.

    I agree with the neurologists Remington and Frith. Markram's work is not science if it's an anecdotal expression built on wishfully rethinking Henry Markram's own childhood. And based on the gap between what's in the popular press and what the science says, it smacks of hucksterism of the worst kind: a lot of religious people, and in particular those who don't learn critical thinking in theological studies, get taken in when the name of their God is invoked.

    EDIT: In other words, the initial claims for Markram's "intense world" position is anecdotal and personal and is being marketed without any empirical support to a group that is unlikely to question it because the resource was introduced under the color of being a Christian. Christianity is not an excuse for bad science.
     
    Last edited: May 4, 2015
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  3. SignOfLazarus

    SignOfLazarus Pbbt.

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  4. Aspergirl4hire

    Aspergirl4hire Mage, Sage, Revolutionary

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    No wonder, my fingers got ahead of me. Let me make a couple of edits.

    Most of what I posted is a quote. I think I cleaned up the opening and closing statements, which are mine.

    <sigh>.

    Some days I can't write without an editor...:(
     
    Last edited: May 4, 2015
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  5. SignOfLazarus

    SignOfLazarus Pbbt.

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    Much of what Markram uses for the "intense world" position seems to be drawn from basic premises in neuroscience, as far as i can tell. to the point where I was confused because I didn't think the idea/theory was all that novel.

    The idea that those on the spectrum actually have greater empathy to their environment, poor sensory gating, that pathways are built according to the frequency of use- all based on broadly accepted knowledge. So the idea that if you decrease stimulation when an autistic individual is young might give them and advantage in the context of being on the spectrum is based on theory, but on theory that is strong. So yes, this would have to be seen in a longitudinal study, but based on other contexts it makes a lot of sense.

    The thing about
    ...
    I have no idea how this conclusion is drawn from that interview, because that's not what he was saying. What he was saying was what I just wrote. [And I get that's not YOUR conclusion]

    I'll grant that I need to do much more exploration to have a full picture of what they are about but these are two neuroscientists- their professional reputation would be ruined if they simply said "I watched my kid and came up with this thing I think".

    My view at this point is that they have legitimate theories pulled from other contexts and so can say with some confidence that they have a certain broad picture in mind. The proposals they have for how those with autism are treated differently actually make a lot of sense. I tend to agree often with views expressed through ASAN.

    Here? I'm wondering what is going on though.

    Quotes from the interview:
    The piece on Sfari seems to approach it as though the idea is to deprive children of stimulation at all. That's just stupid. Yep said it: STUPID. [not you, Aspergirl4hire- neuroprofessors calling out active neuroscience researchers like that] Two professors are suggesting two active neuroscience researchers want to deprive children of stimulation from early on in life?

    Them's fightin' words.

    bit right after the part that Sfari piece states as being concerning about lack of stimulation,e tc...
    ...that doesn't sound like locking a kid in a box. That sounds like making the environment comfortable for a kid and not overwhelming them- from a neuroscience point of view. It sounds smart, not neglectful. No, you aren't going to end up with kids who have RAD [Reactive Attachment Disorder]... but that is actually the suggestion here that Professors Remington and Frith are making [about the Romanian orphanage reference].

    It isn't actually the Markrams making that connection- the two professors writing on Sfari are suggesting it.

    There's something weird going on here and I'm not sure what it is. What you are saying is making sense according to the main article- but looking deeper it's not matching up to what I'm finding the Markrams are actually proposing- I think.
    haha

    also, I have yet to read this.

    That's... going to have to be on the back-burner for now. :p
     
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  6. SignOfLazarus

    SignOfLazarus Pbbt.

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    Sometimes I feel like it would be amusing to keep a tally of how many times I edit/correct/clarify posts because i'm not making sense or my typing is all over the place.

    ...then sometimes I feel like I would be really distressed?
     
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  7. Aspergirl4hire

    Aspergirl4hire Mage, Sage, Revolutionary

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    We may have to agree to disagree here, because I just can't muster the energy to make it a Special Interest.

    I'm saying that if the Markrams themselves are pushing something in public that they themselves say isn't empirically proven--see the red highlights from the quoted article--then that's bad science. If they're doing it because it fits Henry Markram's childhood experience, then it doesn't matter how many credentials they have. The reason I don't believe them is that I'm perceiving confirmation bias and a rush to market. Autism is trendy and trendy means money. I don't get that from the reviewers at sfari.

    This hits a nerve for me on many levels. Not the least of which was my experience blocking an effort by the cognitive scientists I used to work for from using human subjects in an experiment without informed consent. And some other up-close observations about how wishful thinking gets elevated to "theory" when there's money in it. I had a different experience where I salvaged the professional reputations of several PhDs using untested protocols, and as a result, I know more than I ever wanted to about how clinical trials work.

    That doesn't make me an expert. It means that researchers will push a unproven theory because to do so would make their reputations--and enable them to turn the science their way, guaranteeing rank and ongoing research grants.

    Unless they're stopped by equally knowledgeable peers, which the sfari reviewers, in my relatively uneducated opinion, appear to be.

    I've watched two unrelated research groups do exactly that. In one case I rescued them. In the other, I ruined them. Aspie justice gene strikes again. And my career paid for it, too. So there's my bias.

    Whether sfari is right or not, I don't like what the Markrams themselves have said about how much data they don't have about a theory they're pushing in the popular press..which doesn't have a peer review. The Web doesn't count as peer review.

    That's all I have to say.
     
    Last edited: May 4, 2015
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  8. SignOfLazarus

    SignOfLazarus Pbbt.

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    That's fine, but I posted a peer reviewed journal article [Frontiers | Peer Reviewed Articles - Open Access Journals It is a proposed theory- but this spin/discussion/interview thing in popular press is how a lot of science works now.

    I have a LOT of mixed feelings on it.
    I have a lot of mixed feelings about informed consent and children.

    In the end, their theory is basically a way to look at autism and they are suggesting things to do that have been discussed in different ways for a long time. I'm not sure they are pushing THOSE things so much as the theory, and it's being spun as "DO THIS WE SAY IS GOOD!".

    But either way, it's right up my alley, and not likely to be the same case for everyone.
    Not all science is pure and good and amazing thought- peer reviewed or not. Peoples is peoples.
     
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  9. kestrel

    kestrel Well-Known Member V.I.P Member

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    Interesting discussion about this, I can't really add anything except that since it has a title with words that were likely chosen to rise to the top on search engines makes me immediately skeptical.
     
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  10. Maelstrom

    Maelstrom Magical Pattern Auspie

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    I think the fight is about more stimuli or less stimuli to increase autistic adaptation to the world.

    Since more new stimuli increases autistic overload reducing it increases good behaviors in children in the short term.

    But familiarity with stimuli decreases overload for that stimuli area....so for long term improvement increasing the familiarity with a broad range of stimuli will make a child more able to function normally in life without overload.

    The answer is obvious raise the level and variety of new stimuli for a autistic child slowly, using repetition to make new things feel normal. This will get a minimum of meltdowns, while reducing long term meltdown potential permanently.

    Looking at the whole picture instead of just one part is always more effective for solving problems.

    Maelstrom
     
  11. Keithybub

    Keithybub New Member

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    Hmm actually I am an Autistic Christian.
     
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  12. Joshua Aaron

    Joshua Aaron Autistic Bisexual

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    I'm also an Autistic Christian, too. Proud of both being Autistic and a Christian.
     
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