Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments
January 8, 2016
You can also filter by categoriesUncategorized
Sorry, we didn't find anything.
Now Reading: Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments
January 8, 2016
(originally written & published January 8, 2016)
This is not a post that is bashing the GFCF diets and other biomedical treatments. I’ve recounted in a previous blog post that we tried lots of biomedical / DAN “Defeat Autism Now” doctor stuff with the king in his younger years with autism. (I believe the term “DAN doctor” doesn’t exist anymore and it is now called MAPs doctors?).
Anyway, You can check it out that post and read how we tried pretty much everything GFCF diet, hyperbaric oxygen chamber vitamin, B12 injections, etc. etc. etc. etc.
When he showed no improvement with any of those things we stopped trying and stop going to those kinds of doctors a few years back with no regrets.
And over the years I’ve noticed something.
I’ve noticed that as the king has gotten older and we have birthday parties for him and holiday parties in the school with kids in his class we never have to worry about special dietary restrictions anymore.
When he was younger we would always check to see if there was any kids on the GFCF diet or any other diets and lo and behold in every class or at every gathering of autistic kids there was always two or three.
But the king is now 12 and in a classroom with severely autistic kids between the ages of 12-14. And I’m pretty certain that none of them are on the GFCF diet. And I’ll bet if I polled the parents that none of them are doing any bio medical / DAN Dr. approaches or protocols
And I think my observation is that it wouldn’t shock me if we never run across a kid 12 and older who’s on the GFCF diet and/or continuing down the bio-medical path.
My thinking is if your kid had success with the GFCF diet or other biomedical approaches, maybe your kid improved so much that he probably won’t be in the severely autistic class with my kid so we wouldn’t see him.
And if your kid didn’t have success with the GFCF diet or other biomedical approaches and he’s still in the “low functioning” classroom like my kid, well then why the heck would you still be throwing your money out the window. 🙂
Basically, we all can admit that the diet is expensive (and difficult) and most of these bio-medical approaches are expensive (and difficult). So after years of no success there’s nothing wrong with pulling the plug I say.
And let me say again that I think that the diet and some of the other biomedical approaches are definitely worth trying. It’s almost a rite of passage for autism parents these days to try this and that. And I don’t want to be the guy to tell you not to try something that could really help your kid. And I have very few regrets for trying some of this stuff on the king. My wallet has HUGE regrets, 🙂 but not me.
I wrote this in a previous blog post called “Autism Is Like A Cough.”
I believe that some of those things work! When people rave about the amazing improvements in their kid after ___ treatment I don’t think they are lying… and I am truly THRILLED for them I understand that they want to shout it from the rooftops!
But maybe what’s causing their kid’s autism is different than what’s causing mine.
Do you really think that the asd kid who showed significant improvement with the GFCF diet would also have shown significant improvement through chelation? Do you really think that the asd kid who started talking after 20 “dives” in the hyperbaic oxygen chamber would also have started talking after 20 sessions of neurofeedback?
Now, assuming you believe those things work than each of those kids had a different kind of autism… one that was helped by gfcf, one by chelation, one by oxygen chamber, and one by neurofeedback. And we spent the better part of 4 years trying to find the right treatment to “unlock” my son Kyle and help him make some improvements.
But as my son gets older I just don’t see or hear about kids in his circle doing any of these approaches. And when I think back to the days that we would go to the doctors I never remember seeing a kid over the age of nine (?) in any of the waiting rooms are on their websites.
Again my point here is if you did use these approaches and your kid had a nice, I don’t want to say recovery, but a nice boost in functioning level then he probably wouldn’t be in my kids classroom.
Maybe the moderate to high functioning classrooms of 12 to 14-year-olds have kids who are still doing the diet and biomedical approaches? And we just don’t see them?
Now, a quick note, I know some people have their kids on the GFCF diet (or other diets) for other reasons (celiac disease, digestion issues, etc) and of course that makes perfect sense. I’m just talking about the parents (like me) who started their kids on the GFCF diet hoping to see huge cognitive gains and/or behavior gains. If you didn’t see them after 2 years, you’d throw in the towel, wouldn’t you?
I kinda don’t know what the point of this post is. However, it’s been rolling around in my head since May when we had my son’s birthday party with all his ASD friends and for the first year ever we didn’t have to buy a GFCF pizza. Mostly all the same kids… which I guess means that one or two more parents threw in the towel and gave up after quite a few years of trying the diet.
I’ll just leave it at this…
I said before that I don’t want to be the guy to tell you not to try something that could really help your kid….
But on the other foot, I do want to be the guy to tell you, and maybe the only one to tell you, that it’s perfectly ok to throw in the towel whenever you or your kid gets burnt out on all the biomedical treatments. That doesn’t mean you’re a bad parent and it doesn’t mean that you’re giving up on your kid. It just means your a realist, and you are looking at your kid, and his/her functioning levels, and the odds and your wallet and making an educated guess that throwing in the towel, and spending that money on something else (a trampoline! 🙂 is the right thing to do and a better thing for your kid and your family.
As far as me and my kid. Will we ever try another bio-medical treatment with the king?
I dunno. Every once in a while, someone will send me a link to some new protocol and I will read up on it and watch the “before and after” videos and get excited…
but then today as I was researching DAN doctors for this blog post I saw some of the “recovery” videos about the B12 injections… the same videos that I watched 9-10 years ago when we first went down this biomedical path with my son, and I remembered how excited I used to get watching those videos and the disappointment that I felt when he showed no improvements… same thing would happen with every new protocol.
I’m not sure if I could put myself through that any more. I guess if I had first hand account of a kid that I knew who was like my son, and improved after some new protocol that we haven’t tried I might jump back in…but I guess I’m done with the rest…
That’s it. The END…
Totally didn’t mean for this post to end on such a downer. In fact I had no idea where this post was headed and this is where we ended up….oh well, hope y’all enjoyed it and it made sense…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
17 People Replies to “Autism: When To Throw In The Towel On The Diets & Bio-medical Treatments”
Agreed. Met nice folks at the health food store 14 – 15 years ago, emptied my wallet and haven't done GFCF since 2001
hi AD! we met at one of your appearances It was very nice to meet you – anyway- i have an interesting story. I was sick with reflux and went on a plant based diet-just to cure reflux. I stopped dairy, and wheat and meat and suger and caffeine and ate fruit veggies and nuts and seeds. Well- i got to see what it basically feels like to be on a gfcf diet as an adult. It is a freaking miracle. My awful reflux went away, than the perks came, all my 45yr old aches and pains went away, my energy was way up but yet my brain was incredibly calm,haven't gotten sick in ages – so now i know food does definitely effect you and I cant get my 17 yr old son to eat this way- but i did cut him down on some of the junk food that i know is very bad.Its my daily struggle- knowing i could help him but he's to set in his ways to eat as strictly as i do. But we are taking baby steps.I'll take healthy and happy …
Agreed. 100%. After trying different therapies for my daughter, someone better be able to show me PROOF of a magic bullet before I'll send my money down the rabbit hole again. My daughter was only recently diagnosed with high functioning autism at age 14. Prior to this, her diagnosis was speech & language disorder. We spent thousands of $ on Occupational Therapy (not covered by insurance, but did improve some of her sensory issues), Therapeutic Listening (showed mild improvement in speech), Fast ForWord (showed some improvement in reading) and I considered the GFCF diet, but wasn't quite ready to go there. Brain Balance came to our area and my neighbor spent over $6K, followed their protocol to the letter and saw no improvement. Zero improvement. So, I'm with you – far be it from me to tell someone not to try something that might help their child. However, for me, unless you can show me proven, peer reviewed, large sample scientific proof, I'll keep my money in my pocket, thankyouverymuch.
All the comments here are so thoughtful and worth reading; thanks to all of you.
Your article makes a lot of sense to me and I find the comments interesting too. I wish there had been an autism community like this out there when my child was small. At the time, I was being told that he would likely never be verbal. Things worked out differently in this case. Just for interest, I'd like to share our experience with one dietary supplement. In pre-adolescence I started giving the child fish oil supplements, which were attracting a lot of serious research attention at the time. What happened was that this child, who was barely able to write by hand, with huge effort, because of extreme dyspraxia, suddenly over a period of 2 months was able to write cursive and quite neatly. There could be many reasons for this, such as a burst of brain development, a sudden unexplained personal motivation, who knows. But the emergence of this skill coincided with the ingestion of the fish oil capsules. So while I am fundamentally sceptical about most things, I think it's always worth giving dietary and other approaches a try. In the same way, I am very sceptical about homeopathy, but have to admit that on two occasions I was cured of intractable ailments by homeopathic doctors. And I don't know how the sensory based speech therapy we once engaged in produced results, but the fact is that when we returned from our weeks of intensive therapy, the child was surprisingly productive and playful in new ways. So unless the scientific evidence is massively contrary and assuming that charlatanry can be excluded I would probably give alternative approaches a try.
I agree with what you are saying that it is ok to stop (or never start) biomed, especially if it doesn't do anything for your child.
But, just to add my 2 cents worth, I am one of the mythical parents who still does uses diet and biomedical treatments with my 11 year old twin daughters and their 9 year old sister who all have autism. I wouldn't classify any of them as severe but they certainly aren't anywhere close to being high functioning.
The twins have been on the GFCF diet for nine years and all three are on a variety of supplements. The exact supplements have changed over the years depending on a variety of factors such as their mood, energy level, and even the season. Some things even work for a while and then stop doing anything so we stop using it. Some things they have been on since we first started biomed.
We keep on the path not because it is a "cure" but because it helps them. The twins don't have any markers for conditions like coeliacs but if they go off the diet you can tell by their behaviors as well as certain physical signs. The same goes for the other stuff – when we take them off of it they slowly stop doing as well. Their behaviors increase, their focus goes down, and they have more trouble self regulating.
I don't mean to belabor the point but biomed can be useful for children with autism as they get older as one component of a comprehensive approach to treating autism.
I agree with the poster whose son is 14. My daughter is 28 now. Over the years, we have tried amany, many treatments. The upshot: "treatments" don't work. What works best with Crystal is the people around her — she responds so well when she is challenged and engaged; she shuts down when faced with apathy and negativity. Does that sound too pollyannish? It's not. It’s what I have observed over many years.
Unfortunately, this doesn’t enrich doctors and drug companies. It puts money in the pockets of people who work directly with her. And I think that’s the problem – the direct-care providers are often the least respected and least paid, and thus have little incentive to do the hard work involved. In reality, they should be the highest paid.
Well said! My son is 14. It came to the point that I realized that nothing was going to miraculously "help" him — but I needed help *with* him. When I think of the "treatments" we tried… well, I guess at least we tried….
But I liken being autism parents to being parents of the bride. I know that sounds strange, but like planning a wedding, if some vendors find out that you have a child with ASD they will try and get you to spend every last penny.
My son is 4 and was recently assessed in Canada. I was given a list of treatments that were researched and proven, treatments with not enough info and treatments that are not very effective. Special diets was one on the not very effective list. Not saying that these diets couldn't help with digestive problems etc…however not for the behavioural issues and cognitive development. At the same time, we all have to do and try what we think is best for our child and I would never judge someone for trying to help their kid
While I'd say yes MOSTLY true I do know 2 kids who are 15/16, both non-verbal/semi-verbal/complex communicators (mix of words, signs and iPad technology to communicate) , one is in Special School and other is home schooled (would be in special school IF his parents returned him to 'the system' … They BOTH still follow GF/CF diet and/or GAPS diet because when they tried to take kids off behaviour issues escalated again (possibly due to digestive discomfort etc)? … And I'm 38yrs old verbal, on the Spectrum and I also follow GF (mostly CF) diet BUT this is (as you suggested) NOT for reasons of 'curing' mu ASD, or Anxiety, or Depression… Because it didn't make much difference to any of that… It's because GF/CF massively decreased pain and swelling in my body and increased sleep �� quality 😉
While my kid has responded to a lot of biomedical interventions mentioned in your article, I completely understand where you are coming from. Every time I start a new kind of intervention, I tell my self it's ok if it doesn't work. But I have to try. Try while he's young and more under our control, I can't imagine restricting his diet and suplementing an older kid ( mostly because I'm 5'2" lol and it's physically impossible to impose such a regime to a much older bigger child)
That being said I wish you and your family happiness and peace. Each one of us is fighting an individual and tough battle, the least I can do is provide u understanding and acceptance-like you have provided your child. The children know we love them and that's what matters.
My son with autism is also 12. He has never seen a DAN doctor or followed any "bio-medical" therapy. For the last three years he has followed a medical therapy, using an existing approved drug, bumetanide, that has being repurposed and is (slowly) being approved for use in autism in Europe. It costs only $7 a month. It has also been shown to treat ID/MR in models of Down Syndrome. Eventually there will be other serious, non-quack, medical therapies that improve core features in at least some types of autism. Then it will time to bid farewell to DAN doctors, holistic healers, homeopaths and others keen to lighten your wallet.
it didn't work for me I'm still picky eater an take meds for my gi iusses .
think most of thst stuff is snake oil
Well said. Evidence-based treatment is always the safest, most useful route.
Also when a kid is non verbal you really need to try rpm. Rapid prompting method. A teaching method developed by soma for her son tito. It works. Our severely nonverbal child know what is going on. They are trapped in bodies that do not obey their brains. Do rpm.
I am still in the hunt bc I don't like seizures, severely dry skin, excessive appetite, brittle hair, dark circles under the eyes. This shows poor health to me.
I totally agree. 7 kids in my son's class. Only one still on the diet. And all the other stuff, I don't know anyone who still does it. My kid also seems to be the oldest one in the waiting room at speech therapy too.