GFCF diets and small kids with autism

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[quote="guywithAS@Wreck-Gar: i know exactly what you're talking about with flipping a switch. i'm curious there weren't more smaller understandings which followed later. i had a ton of them -- however i worked very intensively on this stuff in a short period of time.[/quote]

Do you remember specifically what they were? I don't think I started having thought like that till much later, maybe when I was in my 20's...just always wondering why everyone else's view of the world was so different from mine..."Why do they all think like that?" sort of thing. Ha, I still think like this even today.

@aann: i'm really glad your son is doing better. i wonder if we'd gotten him on the GFCF diet when he was a baby whether it would have been different. while its not PC to say more improvement is possible, i firmly believe it is -- based on my own experience. i'm hopeful we're going to have ways to unlock the emotional brain in the future. cognitive/sensory problems i have no idea about, but based on my experience on the mild end of the spectrum big changes can happen, just as @wreck-gar describes on this thread. i have experienced the same thing and i know others who have also experienced the same.

you will notice this stuff isn't covered anywhere in the autism professional industry and i'm very curious as to why it isn't. in some ways it feels like the political hot button of "autism cures" are actually holding back serious scientific progress.[/quote]

Well we couldn't have tried GFCF when he was a baby because he was just diagnosed last year as a 9yo. As a baby there was no way a parent could say something was wrong. He met every milestone early or on time. He was extremely clingy and not very socially responsive. I thought that was all b/c he is a boy. It is possible that the more he is on the diet, the more his gut will heal and thus his brain. Also, this isn't anywhere in the autism professional industry b/c only drug companies have enough money to do proper, high scale trials. There are plenty of books about it that i've found in our library. There are a few well written articles online explaining why it works.

its all very new. i got diagnosed this march at age 38, and i'm from a medical family. take care of your boy, i'm sure he's very special even if he's difficult sometimes. he really needs you to be there for him, i'm sure you will be. even though my case is very mild, i'm unfortunately speaking from a lot of experience and am very thankful my parents never gave up on me.

A lot of theories but limited clinical studies.

If you search for Ouinon's posts, she has posted about some research being done in the area. She's become hyper-focused on diet issues, gluten in particular, after testing them out on herself, and feeling they made a very important difference in how she felt and thought.

Special diets only help a percent of those with AS who try them, however, which is why diet problems cannot be "the" cause, and are probably not "a" cause. And we're pretty sure the problem isn't cassein and gluten together specifically (that was a lucky strike that someone tried that first simply because both have higher percentages affected by them), as much as ANY undiagnosed food issue, although gluten seems to have unique properties that put it at the top of the list. If I am summarizing all the stuff I've read over time accurately into a whopping two whole sentences So much to learn.

It is pretty new. I've been "in" the ASD world now for seven years and I watched GFCF take off, get discredited because of the quacks involved, and start to rebuild from a different theoretical angle, with more nuanced protocols and better research.

My son avoids soy but has not tried GFCF, by way of disclosure

It sounds like some potential ASD signs were always there with your son, btw. It is just very hard to know if they mean anything, because they might not ... or they might. Everyone thought my son was destined for great things from practically the moment he was born, I kid you not, even the pediatrician was telling us "that usually means you have a really smart child on your hands." Ahead on all milestones. And my son IS smart. But also ASD.

DW, are you operating under the assumption that there is one autism, and not many autisms? It's entirely, completely possible that autism is one thing behaviorally but has many causes... and that, for some, the cause could be food intolerances. So, just because every kid wasn't "cured" by going GFCF, doesn't mean that some kids weren't.

I tend to think that it works for at least some but definitely not all... I know it makes a difference for me (GI issues and mood and speech), and I was expecting any difference, but it's undeniable.

It is hard to be sure of cause and effect. My son made quite a few developmental leaps around the same age. I attributed it to my letting him stim more And sending him to a great stress management group for kids.

Who knows.

But, if your son can tell you he feels better and is thinking clearer ... good chance it was the diet.

I am one of those who would say that if the ASD presentation was caused solely by food issues, then it never was ASD, just a mimic. They HAVE to figure out how to separate that sort of thing if they are going to be able to select the right protocols for the right children, so I do feel the distinction is important. I know that right now all doctors have to go on is the presentation, but if a diet change could cure a child, as v. simply highly improve a child's functioning, that needs to get a different diagnosis, as it does not make sense to me to apply a cognitive label to a child who is just medically sick. Parents need to have realistic expectations for what is going to happen when they "treat" a child, and some idea on when to choose what protocol. If what we have are kids with ASD presentation and no food issues, kids with ASD presentation combined with food issues, and kids who only have food issues - as does seem to be the case, then the two are co-morbid, but not one condition.

I have zero doubt, zero, that my son was born with his AS and that the major components of it were inherited. And I also there is something in the food sensitivities question. As a frequent co-morbid.

aside from ASD, what other symptoms does your son have? sensory issues? mental retardation? epilepsy?

i feel like there may be certain developmental windows by which if you miss one, the door slams shut. eg in my case, i'm suspecting the cause of my ASD was that i was a super bright 10-12 year old, far smarter than everyone else. so i internally decided to ignore a lot of body language cues. and what slammed the door shut was deciding as part of my identity that i "always voiced my opinion very directly" and "didn't care what others thought".

using some intensive applied psychology, a lot of this has changed over the past 2 years. but i have to actually wrestle now with some pieces of who i actually am. am i the guy who always voices his opinion no matter the cost? or do i take into account my friends feelings and want them to feel comfortable around me so i hold things back more and more. these are hard questions to answer, and the right balance will take years to figure out.

in the case of kids and GFCF, there may be a developmental window as the mind is forming. if the allergies are present, they cause enough sensory issues which disrupt that particular developmental milestone and cause it to be missed. if that happens then emotional development is frozen at that stage. this would only be in *some* kids who have a specific reaction to GFCF. others have permanent sensory issues, such as SuperTrouper, and perhaps your child, which make all interactions with the outside world very difficult.

as SuperTrouper has told me -- she's constantly feeling sensory impairment -- how the hell is she going to pick up on body language cues when it feels like a cheese grater is grating her skin.

i hope this is helpful; i feel like maybe if i share my experience it might help with some understanding in other aspects of ASD.

Oh dear. Well, here's a good example of where I can't follow when things get complicated and can't tell who is responding to whom and whatnot. I'm a little lost.

DW, the issue is that right now, we define ASD behaviorally- so if a person exhibits the behaviors of autism, he or she HAS autism. You can't say that so-and-so doesn't have autism because it was caused by x. I mean, you can, but it doesn't hold up. I'm not saying I agree with the way things currently stand (as a matter of fact, I do not)... just that this is the position we're put in by the Big Guys that write the Big Book.

And yes, in response to GuywithAS, I did indeed make the point regarding the cheese grater. I stand by it.

precisely. and worse is that a huge amount of the diagnosis relies on your behaviour as a CHILD. yet ASD is a developmental disorder, implying improvement is possible. so how much improvement?



its a good quote you wrote, i've read it to at least 10 people so far so they understand. here it is in full, to explain what sensory issues feel like.



this was what helped me realise i don't have sensory issues.

From DW: "I am one of those who would say that if the ASD presentation was caused solely by food issues, then it never was ASD, just a mimic. They HAVE to figure out how to separate that sort of thing if they are going to be able to select the right protocols for the right children, so I do feel the distinction is important. I know that right now all doctors have to go on is the presentation, but if a diet change could cure a child, as v. simply highly improve a child's functioning, that needs to get a different diagnosis, as it does not make sense to me to apply a cognitive label to a child who is just medically sick. Parents need to have realistic expectations for what is going to happen when they "treat" a child, and some idea on when to choose what protocol. If what we have are kids with ASD presentation and no food issues, kids with ASD presentation combined with food issues, and kids who only have food issues - as does seem to be the case, then the two are co-morbid, but not one condition."

Gluten issues may cause autistic-like problems but in my son's case, I feel being GF helps him. He will always be an aspie but far more reasonable. It's like meds in that it helps. Doesn't cure.

SuperTrouper, I think my son's sentitivities are helped by being GF. Maybe simply b/c his brain isn't distracted with other AS problems, I don't know. As is just confusing. In some situations my son can handle tons of chaos. Sometimes not. GF helps a ton.

here's an article a friend sent me which confirms exactly what i've been saying -- but from a totally different research perspective:

http://www.theaustralian.com.au/news/he ... 6131763200

you can read my full story by clicking my name and going to my blog. My daughter has both as Asperger's and gluten intolerance. the gluten gives her migraine headaches which exacerbate her sensory intolerance. being gluten free allows her to function much much better, it's not that it "cured" her, it's just most people function better when they don't have chronic migraines.

(sorry about the typo's new iPad)

i read your blog, it was very interesting.

my suggestion would be to view aspergers as simply a developmental disorder where she is stuck at a certain stage and to continue to push/help her emotional development. i also noticed no ABA in there -- its really worth while understanding that stuff.. to make sure you're reinforcing the right behaviour. thats been at the core of what i've been using on myself to handle things much better.

there are lots of books on aba:
http://www.amazon.com/s/ref=nb_sb_ss_i_ ... fix=aba+th

even if ABA is viewed as just for very low functioning kids i think it can be extremely useful at the higher end of the spectrum as well. all it means is reinforcing the right behaviors.

guywithAS, if you don't mind me asking, what was it that made you suddenly go for a formal diagnosis? I personally wouldn't have any value for it aside from maybe satisfying my curiosity.

because i've been trying to figure out what the $*%# was wrong with me for 25+ years. a family friend who is a psychiatrist spent the day with me.. he picked it up.. so i went to get diagnosed here in NYC.. and it came back positive.. so i started an aspie style intensive research into autism for almost 6 months..

the thing that didn't make sense was i'd already solved a lot of my problems about 18 months prior, just by a total fluke and using a lot of applied psychology. but nothing in the autism literature even came close to discussing what i'd done.

then i was able to link the applied psychology i'd studied with autism and a whole lot of pieces came crashing together and it all made sense.

i could easily get on with my life and forget about this because i am very comfortable i have fixed myself now.. but wouldn't it be pretty amazing if we could solve the mild end of all ASD issues? because if i can be fixed, then so can PDD which is milder than what i have.. and there's a lot of serious stuff which happens in PDD, ie school shootings, bullying, norway style massacres, etc.

unequivocally what i know how to do is "turn the lights on" for someone who is unable to read body language and interpersonal communications. that gives a person who has been socially uncalibrated their entire life the ability to understand what is going on, feel comfortable, make friends, not have meltdowns, etc. you still have a messed up emotional brain from all the bad things that have happened in the past, but all that can be fixed too. i've been doing it on myself and its changed everything.

this is derived from a proven body of applied psychology and i've advanced it a little further. a huge amount of it depends on the psychology found in ABA, which interestingly is what is used for kids further down the spectrum.

right now i sound like a raving lunatic and i accept that. but this is grounded in cold, hard logic and a lot of rational thought and in time i am going to be found to be correct. if you want to know more feel free to PM me and i'll show you some of the things i'm putting together, provided you agree to confidentiality, because its not quite ready for prime time yet. also, FWIW, this isn't a business.