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cubedemon6073
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10 Feb 2013, 9:05 am

momsparky wrote:
Emily Willingham has an excellent article on "growing out of" autism here: http://www.forbes.com/sites/emilywillin ... of-autism/

It's critical to note that many of the people described as having "grown out of" autism have symptoms that the study authors decided to pin on “inhibition, anxiety, depression, inattention and impulsivity, embarrassment, or hostility” instead of the autism these people supposedly grew out of. Yep - whatever.

It annoys me that if you and your caregivers work spectacularly hard to intervene and meet your needs and you are successful, they simply erase your struggle. Just because you are successful at mitigating your deficits does not mean that the deficits don't exist any more. Nobody says the double amputee Paralympian has feet.

ETA: Looks like this is one of those "autism diet cure" books. Many, many kids of parents on this board - and adults on the rest of the site - have difficulty with different kinds of foods. They have all kinds of food intolerances and allergies that are real and diagnosed, and report an improvement in general symptoms when those foods are avoided, or when treatment is provided. ANYBODY whose digestive system is out of whack will see global effects, for instance improvement in behavior or focus, etc. Anyone who is uncomfortable or sick for whatever reason has a reduced ability to cope. Period.

There is no clinical evidence that any particular type of diet can cure autism. (See the Mayo Clinic: http://www.mayoclinic.com/health/autism ... nt/AN01519 )


Thank You! Thank You! Thank You!



zemanski
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10 Feb 2013, 9:26 am

The paper made no judgement on the therapies, just analysed the statistics and the only thing that is important about the paper for this discussion is that it tells us that the "cure" therapies that claim to ensure that children "recover" from the autism do not work because if they did those children would tip the statistical balance the other way - ie. we would be seeing a much higher percentage of children who have had major interventions becoming fully independent adults who can manage their autistic traits without other people being aware of them.

It honestly isn't worth the link for that one point - it's just a long series of statistical tables with a bit of analysis, it says nothing at all about the interventions

There are lots of things that help some children but no one thing that works for all - the GF/CF diet does help some children, as do social stories, as does Intensive Interaction, as does medication........ but these things do not claim to cure autism and do not mean that a child will necessarily develop to the point where their autism is imperceptible to others



InThisTogether
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10 Feb 2013, 9:46 am

Fair enough.


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victorytea
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11 Feb 2013, 9:12 am

What an exceptional response I've gotten from this post and have really learned a lot- keep the posts coming- please!- Paul



zemanski
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11 Feb 2013, 12:50 pm

Give us something interesting to talk about and we will talk........ :D



victorytea
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11 Feb 2013, 3:34 pm

If anyone has more to offer on the topic, by all means send it. - Paul



momsparky
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11 Feb 2013, 8:48 pm

zemanski wrote:
It honestly isn't worth the link for that one point - it's just a long series of statistical tables with a bit of analysis, it says nothing at all about the interventions


I read scientific studies all the time; I've learned that health information is very different when it's presented as a summary or article than it is when you are looking at the actual information and numbers.

I am still curious what they "count" as intervention, and would love to see the study. I've read a lot about "cure" diets that has me awfully suspicious of them (the last go-round of autism "causes" made a huge mess of the correlation/causation thing - you remember, the one about gut bacteria in autistic children? They didn't screen for unusual eating habits, which most autistic kids have.)



zemanski
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11 Feb 2013, 9:25 pm

some people are using the current glutamate research - the impact of glutamates on excitory and inhibitory synaptic systems - to justify the GF/CF diet even though the connections between gluten and glutamates are not being being studied - this is about what glutamates do neurologically, not any connections with diet, leaky gut or anything else. The area of research underway is also broader than looking at glutamates in autism alone.

I'm not saying GF/CF doesn't work for some kids nor that there may not be some link between the observed raised glutamate levels in the brain in autistic people and gluten in the diet, but these particular studies (mostly done using animals) aren't setting out to look at any link and the findings do not a show specific link to diet so they can't be used to support the intervention.

an example

http://www.nature.com/nrn/journal/v13/n ... n3368.html

What makes these studies even more unreliable in terms of using them to justify the diet is that a lot of the work has had to be withdrawn (just last month) because of a problem with the particular mice being used in some of the experiments - the Shank2 mice bred for some of the studies were assumed to be breeding true for a particular gene mutation associated with autistic behaviours but they later discovered that they weren't breeding true but reverting to the original so all the experiments using them to study autism and glutamates have been binned.



aann
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12 Feb 2013, 6:42 am

cure? no.

but diet does HELP my son. you should see the difference when he has a trace of gluten.

i'm going to watch for excessive glutamates just to see if reducing them helps



zemanski
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12 Feb 2013, 12:11 pm

I think it was Luke Jackson (freaks and geeks) whose little brother was so addicted to gluten and casein that when they cut them out of his diet he started to eat the carpet and his mum eventually got in touch with the carpet firm and discovered they use a particular glue that contains gluten/casein (not sure which it was)

There are definitely some children who react to these things and it does make a difference for them, just this particular peer reviewed research isn't yet looking at the diet connection just at the impact of glutamates, which are not necessarily even the same chemicals that cause the problems for children who can't tolerate gluten, but some people still use this research to justify the diet regardless.

The research is actually focusing on using medication to block the glutamates activating the synaptic pathways in particular ways rather than trying to stop them getting to the brain in the first place (we produce a certain level of them naturally and do actually need some in the brain for effective brain development and functioning)