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Science aside, food therapy for autism has support

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A CLOSER LOOK: DIETS AND AUTISM
Science aside, food therapy for autism has support

Jenny McCarthy is the latest to advocate a wheat- and milk-free diet, although hard evidence to support the theory is lacking.
By Mary Beckman, Special to The Times
October 8, 2007
Parents with autistic kids often go to great lengths to help their children develop their social skills and improve their ability to communicate. They might work with them for hours every day or pursue little-known but potentially promising therapies dismissed by the medical mainstream. Some put their children on a gluten- and casein-free diet, on the theory that their children have gastrointestinal problems that can be eased by a food regimen free of wheat and milk proteins.

Now actress Jenny McCarthy has written a book extolling the benefits of such a diet. Following the regimen isn't easy -- eliminating gluten and casein is quite difficult. Gluten is found in a plethora of food products, including bread and soy sauce, and casein is a staple of milk, yogurt and everything else made from milk. But the diet dramatically helped her own son, McCarthy says, explaining that the number of words he knew doubled after being put on such a diet.

Her celebrity status is likely to lend credence to the diet as an autism treatment, but most health experts say there is no good evidence that supports its use in autistic children. "Even if autistic kids have gastrointestinal problems, it certainly doesn't warrant a knee-jerk response to go on a gluten- and casein-free diet," says Dr. Raun Melmed, a pediatrician with the Scottsdale, Ariz.-based Melmed Center, which provides services for children who have developmental disorders.

A 2002 study of 600 children registered with the General Practice Research Database in the United Kingdom found that at the time of diagnosis, the percentage of autistic children with gastrointestinal disorders was the same as in healthy children of the same age. "There doesn't seem to be that kind of gut problem," says experimental psychologist and autism researcher William Ahearn of the New England Center for Children in Southborough, Mass.

But a 2006 study of 50 autistic children in New York who were compared with healthy children of the same age and sex, found that autistic children were more than twice as likely to have GI problems by age 7 than their healthy peers. A large study led by researchers at the University of Rochester is in progress to address whether a gluten- and casein-free diet helps autistic kids; results are expected next year.

Ahearn says children who have developmental disorders such as autism do get more constipation and diarrhea than do other kids, probably as a result of not being potty trained as easily. "Just like every other developmental marker, they're behind," Ahearn says. But he worries that because autistic children are already pickier eaters than healthy children, they might not get the nutrition they need on the diet.

With results from the Rochester research still out, the stories of parents with autistic children who seem to improve on a gluten- and casein-free diet proliferate. Ahearn points out that the children might be improving because the parents are using proven interventions, such as intense behavioral therapy, along with keeping their children on a special diet. "If you do everything at once, and the kid gets better, what are you going to attribute it to?" he asks. "All the hard work the parents put in -- are the children learning new skills because they're being taught?"

But many parents and some autism experts say the diet works. Researcher Stephen Edelson of the Center for the Study of Autism in Salem, Ore., says autistic children often have gastrointestinal tracts that let nutrients slip through unabsorbed or other digestive problem. Some proponents of the diet theorize that the small proteins in wheat and dairy products slip out of the GI tract and head to the brain, where they mimic morphine and cause brain damage. Melmed says the evidence for that theory is shaky, and adds that parents should continue proven interventions -- regardless of whether they try unproven ones.

Timelord Wrote:
We do know one thing at least. Autistic Spectrum Disorders at their root are genetic. What we don't know is why it doesn't affect everyone who has the gene in them. Hence the speculation. See what I mean?


My underlining
We also don't know that everyone 'who has the gene in them' isn't affected.
This is a spectral difference, so some could be very slightly affected.

Much so called evidence is guesswork, or trials & tests on a very few people, not all.

I agree with Lucie that a lot of the bonding is more chemically based. I think that there are a lot of other baby-bonding problems that, I think, would be harder to deal with.

I was petrified of having a baby with colic. I think it would be a lot harder to bond with a baby that screamed through the afternoon and evening than to bond with someone who didn't make faces back. Smile  And even babies that spend their first weeks-months of life in the NICU still have a great bond with their moms.

BTW- as an aspie mom to two kids who's neurology (is that right?) is mostly unknown, I don't really like the idea of an AS mom being the best mom for an AS kid and visa versa. Sad  I am a good mom because I am a good mom... I have strengths and weaknesses, but I love my kids and want to do the best for them. That's what makes a good mom, not their neorological wiring. Smile
I don't mean to be confrontational. Smile

Its just that same sort of thinking that the way "I" do something is somehow better than the way someone else does them.  Not any different than the moms that claim that because they breastfed they are better parents than those that don't. Or working moms that claim that they are better than stay at homes.

I certainly think that some AS moms do a fantastic job with their AS kids. Some don't. Some NT moms are great, some aren't. I just don't think that anyone is great at being a parent because of their wiring. I think someone is great at being a parent because they want to be a great parent and do so by treating their child as an individual and loving them regardless of what they say/do/think.

Smile  Though admittedly everyone has their own opinions.
Although ( at the time ) I was considered to be an 'elderly first time mother', I wanted the children & just did what I thought was right.

I didn't take any notice of what other mothers did, or the silly advice that I was given by the health visitor. ( put one in a nursery because you won't be able to cope with two...no one can ...you will wear yourself out ).Rolleyes

I suppose I was a 'maverick mother' certainly for that era.

This worked for us....why?..I don't know.

I just loved them.Big Grin

woman from mars Wrote:
I just loved them.Big Grin


awww...  WFM, didn't know you were an "old" mom. I was a "young" mom. I always thought it was rather hilarious.  I often have other grown adults tell me how "great" it is that I'm not a drunk and living off my parents with my kids... because I'm somehow too young to have kids. It is a miracle that a baby like myself can somehow raise children.

But, then again, I did potty train myself and my kids, at the same time. Wink

Sorry, back on topic. Has anyone here tried these diets?  I personally am too happy with my milk and bread to give it up for the amount of time required to see the affects.

Really, what would you eat if you can't eat wheat and dairy?  beans? rice?  Okay, I guess I do like beans and rice- smothered with cheese...

I'd be interested in hearing if anyone has tried them. I think I might rather suffer from autism. Smile
Maybe its the casein, then? Wink

It just really makes me wonder... Jenny McCarthy seems to swear by it, but it seems to me that her son might have just been developing like a healthy (albeit austistic) boy? He was apparently slow to speak, or regressed in speaking... I really do need to reread that. Some things stick in my head like glue, others slip right on out.

A myspace friend ranted on it and it got my head wondering why such hooplah if it doesn't work...

Tigger_the_Wing Wrote:
I love that phrase: 'Elderly primigravida'!

Apparently, it applies to anyone over thirty.

Hm..... Child until 25, elderly at thirty...... doesn't give us much time to be independent!


Oh they keep changing the goalposts !! Wink
in 1977 I was only 27  ( when first child was born ) so only 2 years into adulthood, but considered to be 'Elderly primigravida'! Big GrinBig GrinBig GrinBig GrinBig GrinBig Grin

God knows what they thought when I had the last at age 40, but at least I would have been 5 years into maturity.Big GrinBig GrinBig GrinBig GrinBig Grin


sarahjoke Wrote:
awww...  WFM, didn't know you were an "old" mom. I was a "young" mom. I always thought it was rather hilarious.  I often have other grown adults tell me how "great" it is that I'm not a drunk and living off my parents with my kids... because I'm somehow too young to have kids. It is a miracle that a baby like myself can somehow raise children.

But, then again, I did potty train myself and my kids, at the same time. Wink

Big GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig GrinBig Grin

I watched about half the Jenny thing with Larry King last night and several things bothered me about it all:

1. Jenny McCarthy is saying, very publicly (20 million people watched the first broadcast) that diet can CURE autism. CURE! Just total bullsh88t and if Larry had done even a little homework he would have had SOMEONE to counter this misinformation on either concurrently with Jenny and her doc and Holly whatever or later to rebut her. He usually does this with controversial topics. He dropped the ball bigtime.

2. Jenny's son is ONLY 3 or so, so to her he seems "cured". Kids are very different once the hormones kick in and their personalities develop more about the middle school period.

3. As "proof" she pointed to about 5 inches of e-mails she got recently from "mothers" supporting her claim that diet can cure autism.

4. Not one word was said in autism's defense, not one word was said about adapting/reorienting society to AS, not the other way 'round.

5. There was, of course,  endless talk about vaccines- but not one word about autism being in the medical literature going back to the late 1930s- few were vaccined then, mostly soldiers if I remember correctly!

Here's what just one enterprising and intelligent blogger has written about this biomed cure crap (I have underlined some sentences for emphasis):

Natural Variation - Autism Blog
This is an anti-quackery and pro-neurodiversity blog. Most posts here have to do with the author's view that autism is not a new man-made phenomenon, but instead a natural part of our species that has always been with us, and should continue to be. Critical comments are welcome.

Sunday, October 07, 2007
More Evidence of the General Ineffectiveness of Biomed

What I want to do in this post is verify, using actual data, whether claims to the effect that biomed is producing results hold water. I think administrative data is adequate to test this belief, as I will explain.

So what is it that biomed peddlers are generally claiming? First, they are telling us that biomed is recovering autistic children by the "thousands." They also tell us that those of us who do not experiment with our children using biomed will soon repent, that we're guilty of child abuse, and so forth. They've been saying that for years actually.

Regular troll to the LB/RB blog, 666sigma, tells us that most of the autistic children where he lives have pretty much recovered, and the ones who are now mainstreamed without autistic traits are precisely the ones who are doing biomed (source). Let's put aside for a moment 666sigma's confirmation bias, and consider what would happen if what he says is true.

Now, keep in mind that about 74% of autistic children in the US are currently subjected to alternative medicine (Hanson et al., 2007). If biomed were generally effective, it follows that a significant number of autistic children must constantly become high functioning, if not lose their labels altogether.

I think any such effect should show up in California data. Suppose a child is born in 2001, is diagnosed with autism in 2004, and enters the CDDS system then. Your average parent in the US will naturally at that point Google their way to the biomed treatments of vogue. I would assume that by 2006 the child should be expected to be high functioning or recovered, right? This means that the child would lose their CDDS eligibility and would no longer appear in the report. It's important to realize that the state of California is very much concerned with CDDS caseload growth, to the point that in August 2003 a law was enacted (CA AB1762, W&IC 4512) with the explicit purpose of supressing this growth (source). The law requires the applicant to have three life-functioning deficits instead of just one. In fact, 2003 and 2004 saw more autistic individuals dropped from the system than any year prior, at least since 1999 (source).

Note also that CDDS reports are generally on clients with active status, and losing eligibility causes someone's status to become 'Closed' (source).

Thanks to David Kirby, who brought it to my attention, I happen to have data on caseload by birth year cohort from CDDS, as reported every quarter. We can check what happens to the caseload of autistic children born in 2001, for example. I actually went and made a graph of caseload for birth years 1999 to 2004, as reported each June from 2002 to 2007.

go to:      http://autismnaturalvariation.blogspot.com/
              
for graph folks!

This graph shows that with each year that passes, the number of autistic children receiving services from CDDS born in any year between 1999 and 2004 does not drop, but instead continues to increase. The following graph, which might be clearer, illustrates what has occurred to the caseload of children born in 1999 specifically.



From these data we can conclude that autistic children born in recent years in California are not dying in significant numbers, are not moving out of the state in significant numbers, and I would also assert they are not recovering in significant numbers. There are some limitations to the data. For example, it could be argued that increasing recognition of autism is so relentless that it overshadows any recoveries, particularly those that occur before the age of 5 or 6. The data also seems to suggest that no treatment is effective, but in fairness, 40-hour ABA is probably a rare treatment in practice.
In all honesty, though, what we're looking at is the reality that autistic children are not going anywhere. The vast majority will always be autistic. I cannot have respect for parents who delude themselves into thinking some hogwash will magically turn their autistic children into non-autistic ones based on just-so stories they read on the internet.

posted by Joseph @ 3:03 PM  


I don't hate Jenny, just feel sorry for her when she finally realizes that her son is not "cured".

Here's what "Joseph", himself on the spectrum, the father of an autistic boy, has to say about the apparent "cured" ones

Just Look At The Cured Kids

An argument that has come up often as of late is an appeal to acknowledgment of anecdote: "You refuse to look at all the cured kids." Let me be clear that I'd be happy to read any case reports of autistic kids who have been deemed recovered. Unfortunately, I have not been able to find such reports, particularly as they relate to biomedical interventions. The reports that do exist relate either to behavioral interventions or to no specified intervention.

It is important to acknowledge that loss of label does happen in autism, although not very frequently. For example, Szatmari et al. (1989) found that 25% of "nonretarded autistic children" had a very good long-term outcome and could be considered recovered. Note that the study was published in 1989, before ABA was available, and before any of the modern biomedical interventions became popular. Note also that in California, about 60% of all autistics (of all ages) registered with CDDS are "nonretarded". (Clients of CDDS classified as having autism are not supposed to be PDD-NOS or Asperger, but maybe some are). Therefore, we should expect that at least 15% of all California autistic children currently in the system will eventually be considered recovered.

That's a lot of children. And certainly these days most of them will have undergone some kind of intervention. It is not surprising then to hear of many anecdotes of children who have recovered thanks to some intervention.



posted by Joseph @ 8:08 AM   18 comments

Ellen Wrote:
I watched about half the Jenny thing with Larry King last night and several things bothered me about it all:

1. Jenny McCarthy is saying, very publicly (20 million people watched the first broadcast) that diet can CURE autism. CURE! Just total bullsh88t and if Larry had done even a little homework he would have had SOMEONE to counter this misinformation on either concurrently with Jenny and her doc and Holly whatever or later to rebut her. He usually does this with controversial topics. He dropped the ball bigtime.

2. Jenny's son is ONLY 3 or so, so to her he seems "cured". Kids are very different once the hormones kick in and their personalities develop more about the middle school period.

3. As "proof" she pointed to about 5 inches of e-mails she got recently from "mothers" supporting her claim that diet can cure autism.

4. Not one word was said in autism's defense, not one word was said about adapting/reorienting society to AS, not the other way 'round.

5. There was, of course,  endless talk about vaccines- but not one word about autism being in the medical literature going back to the late 1930s- few were vaccined then, mostly soldiers if I remember correctly!


Jenny's son is 5 now. She seems to claim that because he talks he is "cured". She also claims that her BF Jim Carry is "the autism whisperer" which makes me wonder if he's not aspie or cousin...

I didn't see the Larry King show, I caught a flash of it, but hubby would have none of it. Shy  But at least the People's mag had a snippet about autism and how there isn't actually a cure. I'm sure Jenny was upset about that. Smile

I just LOVE hearing about the vaccination cause... {sarcasm} it just riddled with holes... There's probably one for every needle used in vaccines. Smile

EvieS Wrote:
Can I just say that threads like this are the reason I lurk here.
My 5yo son was recently evalualted for some social issues, and it was suggested that he has Asperger's or HFA.  After researching it, I believe he does, though we have decided not to pursue a formal dx at this time.  
He is a bright, happy, loving child who has a unique perspective on things, and I am coming to accept this as simply his personality, which I love.
But shows like the one on Larry King last night scare me- saying that there is a small window in which to act, and acting like children like him can/have to be cured.  It makes me feel like I am neglecting him or making him worse by not pursuing their special diets.
I came here pretty depressed and contemplating whether to try my very picky little boy on the GFCF diet (and what in the world he would actually eat if I did), but the perspectives of the people on this board are always so positive and helpful.  It gives me a new perspective on my son.


Personally speaking, I would first ask yourself if your son has any obvious physical manifestations ie. eczema, athsma, abnormal bowel movements any obvious food intolerances and so on. if he doesn't  I would leave well alone.

If he does have any of these, a visit to the doctor ..who  can arrange tests for any allergies to foods & other foreign proteins m& take it from there.

Please don't be frightened by these programs & the curbie crusaders, this is their aim, to frighten already anxious parents into parting from their money to no good effect..

EvieS Wrote:
Thanks.  My son does not have any of the physical symptoms you listed.  He does have seasonal allergies (all nasal) that seem to be made worse by dairy (milk in particular, though cheese in large quantities will affect him, also).  He drinks rice milk (which he actually likes) and is allowed cheese in small amounts because of this.  Otherwise, food does not seem to bother him.
I try not to be scared by these types of people, but it is hard.  Every time I think I've got a handle on it, and I'm so very happy because I see him doing well, learning, being a happy kid, something else pops up to remind me that it *must be* (sarcasm) so horrible for him, and that I *have to* do something.


There is no cure for any degree of autism, it is possible to treat such physical symptoms, as I described.
If your son has these seasonal allergies & possible dairy food reactions, you are doing the right things.
I have two AS boys, one diagnosed aged 17 & one undiagnosed aged 29, I was fortunate that AS hype was in it's infancy when my youngest was diagnosed, so I wasn't subjected to all of this.
You DO have a handle on it & you will hopefully manage to ignore these stupid people.
Remember this, If as you say 'he's doing well, learning & being a happy kid' then you are doing just fine & so is he.
You enjoy your child & be happy with him as he is.

If he needs it you can both take advantage of social skills & the like, but this is an entirely different thing, this would be helping him to cope better with others', relationships etc.

Truly, non of these so called treatments & food fads are effective, all are extremely expensive & are not treating the disorder.
AS is genetic just like Downs syndrome...that can't be cured by diet either.
best wishes WFM Smile

woman from mars Wrote:
If he needs it you can both take advantage of social skills & the like, but this is an entirely different thing, this would be helping him to cope better with others', relationships etc.

Truly, non of these so called treatments & food fads are effective, all are extremely expensive & are not treating the disorder.
AS is genetic just like Downs syndrome...that can't be cured by diet either.
best wishes WFM Smile

I really do believe that it is genetic, also.  Or at least that it has a very significant genetic component.  My dad, I believe, has it, though when he was little they did know what they do today, thought he was being lazy, and thought daily spankings in school would fix him.  My husband and I also show strong signs.  It really not a surprise that my son does also.  The bigger surprise is that, at this point, my youngest (3) seems to be NT.  
I see so much of myself in my 5yo, and I love that.  I don't want to change him.  We are working on his social skills, and he has made very obvious improvements in the last few months, but it is always in the back of my mind that if I just changed his diet, maybe he would not have to struggle so much.  
Its actually a relief to see that there other opinions out there.

I may bookmark his blog.
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