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Michelle Dawson
05-24-2012
06:04 AM ET (US)
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Michelle Dawson
05-24-2012
05:18 AM ET (US)
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Hi MalchowMama, there's a big glut of autism advice out there, most of it pretty bad, and I don't want to add to it. Mostly all I can advise on are research things, as you know ("read a lot of papers!" etc), and I doubt that's going to be helpful with the choices you have to make.
Also I have a gigantic bias against segregation--I hate it, in all its forms. So whatever I say isn't advice in any way, it is just my highly biased views. For sure I see no down side to getting *a lot* more information about all available options.
My view, in keeping with my biases, is that if autistic kids are segregated, it should be *very* temporary and mitigated as much as possible. The whole idea of taking a bunch of very different, highly diverse kids and lumping them into one "special needs" or "special education" category then segregating them (sending them away to a different class or far away to a different schoool) starting very early in their lives--this strikes me as not good.
There may be excellent teachers working in segregated classes and schools (or there may not be), but it is also likely (my biases, remember) that the standards and expectations will be lower when "special needs" and "special education" get invoked to segregate children.
Segregation itself reflects a problem with lowered expectations and standards, maybe not all the time, but a lot of the time. Also segregation (and low standards, low expectations, etc) are pretty hard to undo, it seems to me, once you have entire segregated classes and schools to fill, and once you have children who, since they have been very young, have been segregated and treated how segregated children get treated. Just having a segregated class in a school might effect how the "mainstream" teachers regard and treat atypical students (why aren't they in that segregated class?).
If that makes sense. It is like anything to do with autism: it is better for autistics to benefit from and be protected by the standards that apply to everyone else. This does not happen when autistics are segregated. I prefer situations where, if the standards are lowered for autistics, they are lowered for everyone else. This obviously appears unacceptable, so it is much less likely to happen than when autistics are segregated and low standards for autistics don't affect nonautistics.
I think also, again keeping in mind my biases, there is a tendency to encourage everyone to be happy and satistfied with segregation and with low standards and low expectations and the like. There is a tendency to be happy that everyone is sort of in their pre-determined place in the scheme of things. And so on. I'm not being too articulate here.
For an (anecdotal) antidote, see http://www.planetautism.com/AuSpin/senate05.htm
I was just really struck by this in what you wrote: "He is in Kindergarten (pre-school) now, but that is much less structured, and they are very accommodating of Sam's needs." Well, great, they are probably very accommodating of all the children, maybe because segregation hasn't gotten into full swing yet? I have no idea, just something that stood out for me.
Sorry to not be very helpful here, these are just my pretty wild thoughts, largely based on my own biases, and definitely not advice.
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MalchowMama
05-23-2012
09:08 AM ET (US)
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Michelle, thank you so much for the additional links, they are really very encouraging. It was really interesting to see the progress made by the children in the last link over the course of the study. So much can change in such a short time. I must say, I am fortunate in that people here never criticise our choice to remain a bilingual household, as they recognise that we really have no choice.
While I'm here, I wonder if anyone has information or advice for me regarding school choices. At this point, I am being told that Sam will be placed in a special education school, which he will have to travel to by bus (with his assistant). I have not yet been to this school, but apparently there are a mixture of developmentally disabled children there, including at least one other autistic. The mainstream school, which my other son attends, is here in town. They have a special needs class for children with behaviour issues and/or milder learning disabilities. I have read here among other places that mainstream education is better, but in all honesty it is very hard to imagine Sam in any school at this point. He is in Kindergarten (pre-school) now, but that is much less structured, and they are very accommodating of Sam's needs. He will be starting school a year from August, so much could change in that time, of course. But right now, there is no way he could function in a mainstream school, IMO. This is a very low-population area, so these are really the only two options available. I really don't like the idea of him being 20 km away from home every day (I don't currently have a German drivers license). Clearly I need to learn more about the school that is being recommended, but in the meantime, is there anything I should read on this topic, or does anyone have any advice for me? Thanks, all.
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Michelle Dawson
05-23-2012
08:21 AM ET (US)
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Re /m12980 there are also a few papers. The two that directly explored this question found that bilingual environments aren't harmful to autistics, abstracts here http://www.ncbi.nlm.nih.gov/pubmed/21938563 and here http://www.ncbi.nlm.nih.gov/pubmed/21947709 The UK group (working with the PACT children) which has now had two IMFAR posters about bilingualism hasn't published a paper yet. There should also be more upcoming from both UBC and McGill (I hope). There have also been more descriptive studies e.g. about information and advice given to parents http://www.ncbi.nlm.nih.gov/pubmed/22268901 Aha, found: free pdf of a purely descriptive paper about autistic children in multilingual families. For a "narrative" qualitative type study involving autism it is pretty good, much better than expected http://autismdll.wikispaces.com/file/view/...ilingual+autism.pdf The study was done before any adequate data were published about autistic children in bilingual environments. It raises a lot of questions at the level of professional ethics, to say the least. Edited 05-23-2012 08:26 AM
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MalchowMama
05-23-2012
02:42 AM ET (US)
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Hi Michelle, thank you for mentioning the information about bilingualism and language development in Autistic children. This has been an ongoing concern for me, though with our situation (we live in Germany, but my German is not good), there is really nothing I can do about it. I speak English to my (now 5 1/2 year old) Sam, and I supplement with some simple German when I am certain I am using the correct words. He is still not speaking very much in either language, but he certainly seems to be understanding more, which is great. The abstracts I read from the IMFAR booklet were very encouraging, suggesting that the previously held belief that bilingualism would result in further language delay may not have been correct.
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Michelle Dawson
05-22-2012
01:40 PM ET (US)
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Vaughan Bell (of Mind Hacks) on the DSM-5 http://blogs.discovermagazine.com/crux/201...-uncertain-science/There was a lot of DSM-5 autism stuff at IMFAR, as you might imagine. I did not see a lot of it. I did attend the improvised--it was not originally scheduled--presentation by Susan Swedo, who heads up the DSM-5 autism committee. It was disappointing, a lot more like a press conference (complete with mob) than a scientific presentation. There was a lot of drama and self-promotion and self-pity on Swedo's part, and far too little time with the as-yet-unpublished (and apparently, incomplete, according to the flashed-by slides) field trial results. She also picked out and criticized--though not with actual data--two papers which have predicted a drastic decrease in autism diagnoses under proposed DSM-5 criteria. Again the direction was toward being as dramatic and so on as possible. I had hoped for a straightforward rigorous explanation and presentation of the field trial data, and how these relate to existing published DSM-5 autism papers. I can't think of anything the DSM-5 autism "debate" needs more than a lot of good science and good ethics, including accurate discussions of the strengths and weaknesses of all relevant studies and data. But this is not what Swedo chose to provide, though she could have. Edited 05-22-2012 01:45 PM
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Michelle Dawson
05-21-2012
10:25 PM ET (US)
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Photos from the recent "ring of fire" eclipse of the sun http://www.boston.com/bigpicture/2012/05/r...e_eclipse_2012.html Lots of people looking up.
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Michelle Dawson
05-21-2012
05:42 AM ET (US)
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Also, photos of the night sky in the UK http://www.theatlantic.com/infocus/2012/05...-and-the-uk/100298/
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Michelle Dawson
05-21-2012
05:38 AM ET (US)
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Very late on Saturday (or was it very early Sunday?) we got back from IMFAR in the middle of a Montreal riot, here is the Globe and Mail story http://www.theglobeandmail.com/news/nation...ets/article2438267/
There was a big fire just down from the bus terminal when we arrived. There were police everywhere, in large groups of cars tearing by with sirens and on foot in helmets. There was at least one helicopter, a lot of noise, I spotted one media van. There are police horses in the G & M video but I didn't see any. It took a while to get home.
IMFAR 2012 was mostly disppointing, especially compared to the previous two IMFARs. Of course I could have just missed all the good stuff somehow. This year with the abstracts being embargoed until late Wednesday it was harder to figure out what was worth seeing.
One good note was that there were 5 posters about autism and bilingualism, a new record. But there were only two studies, both of them posters, about savant abilities in autism. INSAR has now posted the IMFAR 2012 abstract book as a pdf, it is linked to here http://imfar.confex.com/imfar/2012/webprogram/start.html
Bryna Siegel had a study about the adult outcomes of early autism interventions (abstract is here http://imfar.confex.com/imfar/2012/webprogram/Paper9867.html ), but the total reported N on the poster was only 11, of whom 7 did and 4 did not undergo early intensive ABA-based interventions as children. Lots of variability in the reported adult outcomes, which were unrelated to early intervention status. As reported, the results do not mean much, with a tiny sample and a weak research design. Still it is unusual for *any* adult outcomes of early autism interventions to be reported in any way.
There was also a LEAP vs TEACCH vs "business-as-usual" unregistered (that I could find) large-by-autism-standards non-RCT presented in one of the sessions, abstract is here http://imfar.confex.com/imfar/2012/webprogram/Paper11388.html Unfortunately I missed this presentation. Last I looked, LEAP was considered ABA-based. From the IMFAR abstract conclusion: "The absence of differential treatment effects suggests that all models were having a significant impact, although one cannot rule out the possibility of maturation." But that was based on preliminary, incomplete data.
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Philip
05-18-2012
05:05 AM ET (US)
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Hi Michelle,
Thank you for the link to the really interesting study by Isabelle.
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Michelle Dawson
05-17-2012
07:29 AM ET (US)
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Hi Philip, I'm not involved in any IMFAR study this year. Some of my colleagues have some pretty interesting studies though, especially this one from Isabelle http://imfar.confex.com/imfar/2012/webprogram/Paper11304.html here is the conclusion:
"Conclusions: These results show that non-speaking un-testable autistic children who are regarded as very low-functioning can be evaluated with certain tests that require few or no verbal indications. More importantly, some non-speaking autistic children considered to have an intellectual disability were shown to have intellectual potential in the normal range, which bears implications for educational interventions. Furthermore, a possible association between performance in simple-to-administer perceptual tasks and performance in more complex reasoning abilities could be of particular importance when facing difficulties in the evaluation of non-speaking and/or very young autistic children. Indeed, even if no evaluation seems possible with an autistic child, obtaining a good performance on one of these tasks could suggest hidden potential that should be encouraged."
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Philip
05-17-2012
02:45 AM ET (US)
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Hi Michelle,
Having looked for your name in the author index in the IMFAR 2012 abstracts I found it was not there. Does that mean you are not involved in any presentation? I hope you have a really interesting time there.
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Michelle Dawson
05-16-2012
10:54 PM ET (US)
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For those interested, the IMFAR 2012 abstracts are finally up, you can search them via this page http://imfar.confex.com/imfar/2012/webprogram/start.html
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Michelle Dawson
05-15-2012
08:04 PM ET (US)
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"If the four-fold difference in the new survey does not raise concerns about different incidence rates across states, why should a less than two-fold rate difference in surveys conducted six years apart raise concerns about an epidemic?" That's Eric Fombonne from a Q & A about the massively fanfared recent CDC autism epi update http://sfari.org/news-and-opinion/q-a/2012...s-rising-rates-realAmong other things, he is calling attention to the CDC's claim that the method they use for these epi studies is always the same, across sites and across time. Edited 05-15-2012 08:24 PM
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Michelle Dawson
05-14-2012
10:05 PM ET (US)
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Just in time for IMFAR, INSAR has fancied up their website http://www.autism-insar.org/
The content hasn't changed a lot. There are new grand but vague "strategic initiatives." There is a letter from the current president, Helen Tager-Flusberg http://www.autism-insar.org/president-message
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Michelle Dawson
05-09-2012
11:29 PM ET (US)
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Progress: http://www.theglobeandmail.com/news/world/...age/article2427772/
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