Question about Wakefield

[mc4_a]

Probably not the best first post, but here it goes...

Question: Could someone help me understand why people find Wakefield to be such a persuasive expert on autism?

Having been in the Autism community for a couple of years now I've seen many children on GF/CF and find in general they are not particularly different or higher functioning than say a child that isn't on a GF/CF diet.

Considering it's a particularly difficult to do (I see parents striking more and more from a child's diet -- because they're not seeing great results -- and they get down to about maybe a dozen things they are allowed to eat) time consuming, expensive and not shown any improvement in scientific studies, I have to wonder why?

Is it because you feel like you have to do everything possible because something might work. It is because accepting that autism is a neurological problem means you have to accept that's there's no cure?

I'm not trying to flame here. I really want to understand it. I would never consider asking someone in person these questions because I'd probably be ostracized.

[Lara]

Hi mc4_a,
Just wanted to say welcome to the forums here. :)

I'm not sure exactly who these "people" are or what you've read to come to the conclusions about these people that you have. Perhaps addressing that on the threads you've read might help make it more clear for them... like if you've read something on a thread you could perhaps just ask the person who wrote it what they meant.

take care,
Lara

[Isabelle]

HI!! Welcome!! :D

You asked for our thoughts.Here are mine :D

What Dr. Wakefield has found is that SOME children with autistic features/tendencies improved to almost be "normal" in the GF/CF diet, others have shown improvement on the "Specific Carbohydrate" diet.

Every child with autism is totally different from the other, they respond differently to "treatments". Some of them suddenly or gradually improve by the age of 5 with "treatment" or without. It might be that their immune system were suppressed or just matured and it started to kick in.

The main goal of Dr. Wakefield is to let know parents whose children withdraw into autism after the MMR vaccine is that there is hope to recover with diets and supplements.

He bases that advice on his findings as gastroenterologist, he is not the only one, but he is the one who blames entirely the new surge of autism on the vaccine MMR, more specific he found the measles virus in some children' gut.
He advise parents not to stop the vaccination program but to be judicious about them, there is not a law to force parents to follow a strict schedule of vaccination.
"Judicious" means that parents has to take precautions, to be sure their child is in good health that they are no sick with colds or feeling down and to ask their doctors to spaced out the vaccines.

And, it is important to make sure that vaccines are thimerosal free. There is plenty of advice on his video tapes.

No flames here, but a lot of long posts by Queen Mili. Enjoy!

[peglem]

Well, Wakefield got his reputation because he listened to parents who said their children were fine up until they got the MMR. He responded to their concerns by doing a study. He was surprised to find that only the autistic kids in his study (but not the nt's or MR kids) had inflamation of the gut lining and the inflamation appeared to be caused by the vaccine strain of the measles virus. He recieved all kinds of pressure to retract his findings, but stuck to his guns. It was refreshing to me at the time to hear about a doctor who listened to parents.

originally posted by mc4-a:
Is it because you feel like you have to do everything possible because something might work. It is because accepting that autism is a neurological problem means you have to accept that's there's no cure?


I did the GF/CF diet with my daughter for about 6 years. Well, the CF part for about 2 years. It didn't seem to make any difference when we added dairy back. I do think the diet actually expanded her diet because she seemed willing to try a lot more foods when the only few she would eat before were gone. Otherwise, we saw no DRAMATIC changes- but there were small things, maybe just because she was eating better and healthier. (she'd had some terrible eating issues) The reason i tried the diet is because I'd heard that other's had some success with it, there were no doctors at the time who had any treatment suggestions and it seemed like at least it wouldn't hurt to try it.

As far as accepting that autism is a neurological disorder- of course it is. But, unlike other neuro disorders, where doctors/scientists have a clue where or why the problem occurs- there is largely no neurological explaination for autism. Most neuro disorders have at least some kind of known treatment, even if no cure- but nothing for autism. Nope, we're just supposed to "teach it out of them". This was/is the most frustrating thing for me- the autism label was slapped on, and for the doctors, it explained everything and relieved them of the obligation to find out what was wrong. I've since figured out some medical problems that are the source of some of my daughter's "autistic behaviors". She should have gotten treatment much sooner...but it was assumed to be autism and they wouldn't look past the label.

[milivica]

Probably not the best first post, but here it goes...

Question: Could someone help me understand why people find Wakefield to be such a persuasive expert on autism?


Well, yes for a first post it was different, but you explained yourself well...the question seems logic based, but not verbose enough to be aspie so I'm guessing you're not, and not desperate enough to have a child severely effected with autism either...is this correct? Just wondering. Cause often, studies are useless in that, 1 study says 'this', so they do 10 to show 'this' is wrong, then 20 to show that in fact those 10 studies were flawed and in fact 'this' is right, etc etc... So, if the finding in a study makes sense to me, common sense, I consider it at least.

To try and answer you, I find Wakefield to be first and foremost credible. I do think of him as an expert for one thing due to the sheer volume of patients PLUS his way of communicating with moms. I also think he is a hero...just as I find anybody that seems to continually put themselves in a hard position to help others. I actually don't know tons about what Wakefield has found (not in detail like some here) but from what I know about him, most of what he has done to help those suffering with autism, and their families, he has gained NO benefit from, and in fact has been 'punished' for. Because of that, I find him believable - that's hard to do in a word of experts that are all about gain (money and ego).

I can't say how expert or not he is, how right or wrong he is...I can say I have tried some of his ideas out and they have worked for my child (probiotics+GFCF) and ended 7+ yeas of diarrhea, and I mean never ever did he have a solid poop in all those years. Just runny yellow watery with gelatin-glob explosions. I can say that of all I've read him say, he makes sense and I have not personally found any evidence that he is incorrect - that is, some kids show vast improvements with GFCF or chelation, but not all - which I would not expect cause perhaps all autism is not caused by mercury or diet (does that make sense).

So, I guess my biggest thing about Wakefield, is he seems to be doing all the things and honest doctor would do, that gives him credibility to me. Due to that credibility, I have read a lot of what he's said, and what he has seen for himself then wrote about, have tried some ideas based on that, and have had some success with my son that I otherwise would not have in terms of his GI tract. UNlike what I experienced going to pediatric GI docs, which kept saying diarrhea was 'not abnormal' for children with autism. To me, that makes as much sense as having a knife in your neck in the ER, and receiving no help because bleeding with a knife in your artery is 'not abnormal' for stab victims. That is the type of 'help' that drives us moms to seek out credible doctors whose paperwork and findings we can read hopeful of finding our own answers.

Having come so far on the spectrum in my own life, I find it NOT believable that there is no cure, no way to develop neurologically. There is a cure for everything whether we humans know what it is or not is another thing. If there becomes a way for drug companies to make big $$$$ from autism then yes I would say there will never be a cure.

[mcewen]

My two pennarth? Desperation - try anything once, listen to every argument just in case there is a kernel of truth in there somewhere, some useful tit bit or insight, mining for clues in the details. That's not to say that you don't also need a healthy dose of skepticism to go with it, but there's no harm in investigating and researching every tiny crumb that you can find.
Best wishes
http://whitterer-autism.blogspot.com

[tgrimes]

Is it because you feel like you have to do everything possible because something might work. It is because accepting that autism is a neurological problem means you have to accept that's there's no cure?



You got it.
Some parents can go from seeking comfort in trying every new thing, reading every new theory, and actually feel uncomfortable still, as if they can never do enough... to deciding that time and living life is the best healer, and keeping well-intentioned but unproven 'interventions' by medical and school staff at bay wherever possible.

If I could go back in time and change something about my oldest son's autism, it would not be the autism, or more or sooner 'intervention', it would be the time I spent agonizing over it.

[Isabelle]

something else i'd like to add, of what i have seen and read, a young child with autistic behaviours and in general nt or with other disability, benefits from a healthy diet, as natural as possible, home made, basic supplements, probiotics, anything that encourage or boosts their immune system.

the immune system is in the gut, a healthy gut produces all the nutrients needed for a brain/nerves to develop and to function.

finally, if the disability is unchangeable, they need compassionate support. their family, mostly mothers, need to be relieved of their care to keep their sanity about and continue to be loving towards their so difficult child.

they need a stable environment, the 24/7 presence of a person, usually the mother but they also need a friend who is consistently cool, calm, collect, a tutor, a guide for the rest of their lives.
they need communication tools, they need to be engaged one to one in a fun way, not to see his 'behaviours' as psychiatric but their way to communicate.

they are always going to be people-dependent, if people are not willing to relieve the mother from their care. giving him/her pills are not the solution, many times aggravate and perpetuate negative behaviours.

my thoughts....:D