GFCF diets and small kids with autism

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does anyone here know any parents who feel their kids have been "cured" of autism due to adopting a GFCF diet?

i'm specifically interested in talking with a parent who have a confirmed diagnosis for their child from a reputable autism center - but today the child has progressed to the point where they are undiagnosable.

here's an example of what i'm looking for:

http://www.reddit.com/r/IAmA/comments/j ... osed_with/

any suggestions?

GFCF diet has helped my son tremendously. I highly recommend doing it 100% for at least 3 months to see if it will help. My son it not nearly as argumentative or deeply sensitive. He is much more NT than before. But I think my son will always struggle with sensitivities and being awkward.

interesting. how old was your son when you started him on the GFCF diet?

Tried that w/ dairy free as well... found it was a load of crap (at least in my case).

The guy does not even say what his son's symptoms were. I highly doubt any diet is going to help with language & social delays.

Look at the comments to the article. If the boy, at age three, suddenly has zero symptoms of autism it must have been a misdiagnosis.

I don't think parents who think their kids are "cured" of their autism post here. It is pretty obvious the forum membership, overall, doesn't support that concept, even though a large number do consider the special diet to be very helpful in the right situations. But the overriding sense I've had over the years is that this is a community that feels either the child in such stories was either not actually cured (ie is still AS, just much higher functioning) or was improperly diagnosed the first round (diagnosis in young ones is quite tricky).

I have watched some of the "recovered" child videos on the internet, and each time I saw a child that started with autism, and ended with autism. I don't "get" what the "recovery" is supposed to be; I see a child that has developed and improved, but that has not stopped being autistic. I think many parents get "miraculous" results now-a-days, and pinpointing exactly why is extremely hard. AS children simply don't develop like normal children. Specific improvements may or may not have happened anyway. The only thing to trust are the broader studies that compare broad statistical results, and not any one personal anecdote.

Someone please correct me if I'm wrong but I think the major difference in most of these cases is that the child went from nonverbal to verbal. I can assure you 100% that the most difficult thing to deal with when it comes to my son is our inability to communicate with him and I think that is what causes so much heartache for so many parents.

I remember one of those "recovery" videos on youtube, it started of with the kid completely non-verbal. Then when he was "recovered" he was verbal but still had a lot of autistic traits - loads of handflapping was the most noticable.

You know, I haven't followed enough to know. One of the hard things is that I grew up in a world where no one panicked if a toddler did not talk, lots of toddlers did not talk, and as long as the speech came in by 3 or 4 it was considered "just something some kids do." My best friend from college's son did not talk until 3 1/2 (I was a late starter with my family; most of my friends kids have long left the nest). Today it seems like he would be in intensive therapy and his first words would be labeled a recovery. But it really was just "something some kids do" with him. And I am sure also that his result was not always the case, that some kids stayed non-verbal, and doctors looked for other clues. With my friend's son, for example, we could all tell that he heard us. Is there any allowance for that now? Are they careful to separate out the kids just taking their time from the ones with clearly more going on? Because if they aren't, a huge percentage of these so-called recoveries may simply be kids like my friend's son.

There are members here who didn't talk until as late as 10 or 12. Really interesting stories they can share. They don't know why they suddenly came out of their shell; they just did.

All that said, I agree that having a non-verbal child who also doesn't have any other obvious ways to communicate is super difficult. How do you know what the child needs or wants if they cannot tell you? You have to be so hands on, so deep into who they are, well past the infant stages where needs and wants are rather simple. I do get why there are parents who try anything and everything to change that.

I do wish you all the best with your son. You definitely deal with things I do not know.

interesting posts! i went back and watched some youtube videos of "recoveries". it seemed clear to me that some were misdiagnoses. but i don't think others were.

i am 39 years old and was diagnosed with very mild aspergers earlier this year. but i've been trying to figure out what was wrong with me my whole life and i have a lot of data about what has worked and what hasn't.

the theory i'm working with at the moment is that autism is caused by a missed emotional developmental milestone. in my case i believe it was because at 10 years old i "knew" i was smarter than everyone else. so i didn't need to pay attention to their body language. this later became "stuck" as it became part of my identity.

as i've looked further into autism it seems like a lot of people have pretty severe sensory issues (which i don't). it would seem those sensory issues mess up normal human interaction and could easily cause missed milestones as well. here's a description of those sensory issues from a 23 year old girl who is mostly non verbal:

"For me, going through a store is like walking through a fun house with all those crazy mirrors, with strobe lights. Oh, and put the TV and the radio on, then try to understand what someone's saying to you. Someone's going at your skin with a cheese grater and tickling you with a feather at the same time. That's part of it, anyway."

it would seem to be very difficult for her to have normal human interaction with all this happening. so missed milestones wouldn't be too surprising.

in the case of glutein and casein, i'm wondering if those are allergies which end up acting like a sensory problem. and that the GFCF diets are alleviating those issues, and thus enabling continued emotional growth. my guess is that if its used early enough, before the child forms this part of their identity, then they manage to pass the developmental milestone and continue maturing.

the way i view these developmental milestones is to think of emotional growth like walking along a road. every so often there is a small hill we have to walk up and down the other side. but if we have a certain problem we end up not being able to walk up and over the hill. in time we just decide to build a camp before the hill and live there. but some techniques are able to shake us up enough to get us over the hill and continue developing.

we know autism is a developmental disorder, we just don't know how. i'm trying to align my experiences with some of the things we see on the lower end of the spectrum and this is what makes a lot of sense to me. i'd be very interested in your thoughts.

You know, I have the feeling you are right. My son is almost 3 1/2 now, and I honestly don't know what's going on. The doc here says "autism like symptoms" but he doesn't have an official diagnosis. The only repetitive behavior he has is counting all the time. He doesn't hand flap, toe walk, or appear to have any serious sensory issues.

In the past month or so he's been getting a bit more communicative, he can do one-word requests. He was just asking me for pancakes. Just says "pancake." But we don't have any eggs, so I can't make them, he can't understand this. If he is speaking in full sentences by this time next year, then yeah, this could easily be one of the so-called "recovery" stories. Not that I am trying to predict the future or anything...

Personally I think the root of it is a deficiency in theory of mind...I didn't have much of a "sense of self" until I had this weird epiphany one day when I was in the eighth grade. I remember thinking, "OMG, hey, I can think!" It was quite strange.

this kind of experience is exactly what i'm talking about. do you remember the difference in what you thought before and after? did you have a headache at any point? and were there lots of smaller realisations which followed along later?

My son was born different. I would never have put an AS label on it, but he was ALWAYS different. Lead theories peg. ASD's as genetic (multiple genes) and maybe some environmental enhancers or triggers. That theory jives with my persoanl experiences.

They have documented that AS children seem to have a period of accelerated brain growth as toddlers. This leads to additional pruning shortly after (all brains apparently prune, but if more connections have been made, that is more to prune). This process could easily magnify the gifts and burdens aspect of AS.

An adult with gluten issues described gluten to me as making their brain foggy. That would obviously interfere with learning and presentation. People sensitive to milk produts experience cramping and natiousness. Who can learn when they feel like crap?

I think more is going on than missed observations. Even with the opportunity to observe, and my son is good at observing, he often does not understand.

I don't remember any headache. It was more like someone flipped a switch. I am pretty sure I'd have qualified for an AS diagnosis before the event, but not after. Nothing smaller later one. Just this big one. I don't remember the details of what I was thinking about, it was so long ago.

In answer to your question, my son was 9 1/2 when we started on a gluten free, cassien free diet. He no longer hand flaps or is as argumentative or constantly upset. He clearly continutes to have theroy of mind issues. Now, you might have to consider, my son is homeschooled so he has fewer social confrontations than others. But my point is that he is clearly different from before being GFCF. I used to be torture on me to get him to do any school work and now he gets stuff done. My stress level has gone down tremendously.

@DW_a_mom: i can believe about the difference. but maybe its the differences which are causing autism, ie cognitive issues or sensory issues? and maybe we can still get in there to trigger the emotional development and move things forward, even if the other problems still remain?

@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.

@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.