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John Ruch
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John commented on the article |I've quietly enjoyed reading many of your posts, and I think the "Doing It Yourself" section of your new site has great promise. As one of your recent posts spoke on, there is so much these kids can learn outside of the classroom on their own and with help ("news at 11"), even when traditional modes of observation and evaluation would suggest that teaching is hopeless and progress unimaginable. I think that high expectation can-do attitude needs to be reinforced more, and is a critical message both in supporting the need for appropriate and diverse lifelong educational opportunities, and in nurturing personal growth at home.
I've also enjoyed the mixture of adult issues/parenting posts on Change.org, as there is so much unfinished business that will affect my child sooner than I, or the community, will be ready for - so I am sorry to see that convenience end. Thank you also for your advocacy efforts in education, housing, etc, and best wishes on your new project.
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John commented on the article |...oh man, I hate it when I misspell something(s) in a sentence that includes the word ignorance...
Should have read:
"First, this study addresses the ignorance of science, not the ignorance of the public."
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John commented on the article |
First, this study addresses the ignorance of science, not that ignorance of the puclic.
We do hear in journals like Pediatrics of associations between auto-immune diseases in mothers and an increased risk (3x) for autism
http://www.nlm.nih.gov/medlineplus/news/fullstory_86486.html
(note this study also finds a link between mothers with celiac disease and autism, aka gluten intolerance..., while remebering that there may be one pathway to autism)
We have also heard reports recently of potential harmful antibodies being passed from mothers to the fetus. It is suggested that in some cases the antibodies that normally protect the body from invaders attack or interfere with the body instead. Given this mechanism, it is within the realm of possibility that vaccines play a role in the presence of self destructive antibodies in some people leading to a range of disease conditions including diabetes, allergies, and ?. A vaccinated vs unvaccinated study should look beyond autism at children's health in general and will help identify unintended long term health effects associated with vaccines, if there are any. We already know vaccines produce immediate serious short term health effects in some kids.
Science is rarely, if ever, conducted under ideal conditions, yet the results of imperfect studies yield practical information. It can be difficult to distinguish a flock of birds from a squadron of stealth enemy fighter jets, yet we do not discard the tool or turn it off. A vaccinated vs. unvaccinated study begins the process of turning on the radar in this line of inquiry. The results may be subject to scrutiny, but may have sufficient resolution to tell us a flock of something is headed our way, or that nothing can be detected using this tool.
I do think that the people who have gotten in the way of this type of research have protested a little too loudly, and it would be best to do it now as perfectly as possible without further obfuscation, stalling, or ignoring the low hanging fruit. Science is as much about detailed observation of what has occurred as it is about having all the answers as to why it occurred. This study is about being alert and conscientious observers of situation that we create.
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John commented on the article |Increased awareness, attentive education systems, better diagnosis, expanded definitions, and diagnostic substitution clearly make up a significant portion of the growth in numbers showing up needing services. Yet while the final math is unclear on paper, the answer is very important, so sitting on the fence is not a great option. A true rise suggests that something can be done to halt the trend or even reverse it. That's not an insignificant point in either economic or human terms. A verified true rise would compel science that might lead to avoidance of something developmentally or harmful, or treatments that preserve the personality and talent traits that often (but not always) accompany autism while lessoning the disability traits that prevent so many individuals from living independent lives. (please excuse the run on)
It seems that much of what divides people with snark, anger and frustration is where they position themselves on unresolved issues. We tend to argue over the large gaps in what we know rather than the narrower points that are clearly settled.
Everyone's education, personal experience and family makeup will mark the intuition they use to get off the fence. My personal view tells me that something extreme and unexplained in terms of increased severity and prevalence is happening in generations x&y compared to the boomers. I do not believe it is even a close tie, but even if it were, it would have to go to the numbers runner. The people who need help are here, the resources and best practices needed are not, and the funding equation only gets worse down the road. I believe the prudent thing to do is to approach this with the urgency of an epidemic. We could be wrong no matter what side we jump off of the fence onto, but I would rather be wrong this way, then to ignore the possibility that we've really screwed something up in the modern lifestyle when we might have a chance to fix it.
I tend to find very little of what Baron-Cohen says here to be very useful. Digging deeper into the far tail end of the spectrum to find similar traits does very little to explain the peak of the curve, though it may be a preview of the next generation. -
John commented on the article |I have to say, that post by Jim on lasso training Charlie and their subsequent bike adventures has stuck in my mind. I look forward to an update. Teaching my son to ride a bike has become a long term goal, but for now he is happiest riding in an attached trailer. I even brought it up during his IEP this spring to try and work peddling skills into motor skills work. I hope the juxtaposition of HMO's and bike rides in the headline does not belie a learning lesson, and if it does, I hope everyone has fully recovered.
I have to say I have mixed feeling about insurance coverage and autism. I agree with part of what Enthoven said, that we must "..recognize that the educational and other supportive services autistic children might need are a broader societal responsibility...". (However, it would have been better if considerate grandpa Enthoven also disclosed that he had been a consultant for the Kaiser Foundation Health Plan) Services should be available to all kids, and adults, not just those with good insurance. At the same time, utilizing autism services should not impact employer insurance premiums such that it pushes people to hide autism or reward discrimination. I also wonder what the impact will be on public educational programs that are leading the way in providing optimum programs. Will they feel disobliged to offer certain services now that insurance companies are required to cover them? If so, will those services be available outside of school hours locally, if they are available at all? Will and influx of money for services without a corresponding influx of trained providers really result in change? Will the learning day get extended beyond what a child can be expected to cope with?
I personally believe the free public/private educational setting is the most appropriate and meaningful way to efficiently and effectively deliver services for kids, not that cost control isn't an issue there as well. At the same time, there need to be minimum national standards developed and imposed (along with federal funding) so that this battle does not have to be fought in every home rule fiefdom. The funding and provision of autism services for kids needs to be worked out hand in hand with education. For now though, hopefully a lot of kids will start to get the service they need, and hopefully more thought and funding will be put into services fo adults. -
John commented on the article |Great write up Dora. Thanks. This combo looks very promising, but I'm a nervous shopper when it comes to new technology. I'm getting itchy though. My son's school AAC is still brand new, so it's been a little hard to justify this so soon, but I'm working on it. There is so much that can be done on this platform at a new lower price point that it makes it very exciting.
I did finally get my son to play with an iTouch at a Best Buy. On his first try he held his finger on a song item a little too long and the delete option popped up. Hopefully Apple will give an option to lock this down sooner than later. As users have mentioned, backing up via sync should make that a minor issue.
Right now he gets annoyed if we try to get him to use his AAC at home even though he is great with it at school. I'm hoping the entertainment value of an itouch will help make it "his" at home, and be something he wants to use as the gadget relates directly to an entertainment goal.
I would be careful about buying any bluetooth devices before OS3 comes out, along with looking for explicit compatibility statements. -
John commented on the article |Dora - very cool. Thanks for sharing this. I couldn't see your post yet in the archives of the proloquo2go community. I just signed up, so maybe it will hit the archives in a day or so.
Its a great price for what it can do. I can't wait to find one to test it out. I might have to suggest it to the local Apple store as an autism awareness effort.
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