Another Topic of Controversy… No I am NOT Trying to Find Them, They Are Everywhere

Ever feel compelled to write about something that you’d just as soon not talk about?  I’m feeling that way about today’s post for a whole host of reasons which I’ll discuss.  But before I do, let me just say,  this is another one of those topics people feel strongly about.  I’m going to launch in anyway, because I’m either a glutton for punishment or I just can’t help myself or maybe, just maybe, this will strike a chord for others who may find it helpful, but please do remember I am not pretending to be an expert about any of this.  I am going to relate my story.  If it resonates with anyone else, great and if it doesn’t that’s fine too, but it is one of those topics that needs to be discussed.  So let’s do that.

THE DIET.

The gluten-free, casein-free diet was one of the first things I read about after receiving Emma’s diagnosis.  I have to add that when I read about it I had enormous misgivings that had nothing to do with Autism or my daughter.  You see, from the age of fifteen until my mid-thirties I had an eating disorder.  I compulsively over-ate, I sought comfort and solace in food, but I was also morbidly afraid of gaining weight so I would eat enormous amounts and then taught myself to vomit.  Somewhere along the way I became anorexic too and over the next two plus decades yo-yoed between my all time lowest weight of just under 110 pounds to over 160 pounds.  Food and my weight were nothing short of an obsession.  In truth, I was an addict.  For those of you who recognize the addiction analogy with food I don’t need to say more, but for those of you new to this idea, I’ll just say this, food was as addictive to me as heroin is to a junky, the only difference being I can’t ever just stop eating.  I have to “play in the pool of my addiction” as my fabulous husband likes to say.

I’ve written about all of this ‘here‘ ‘here‘ and again ‘here‘ for those of you interested in all the gritty details.

In my mid-thirties I found help from other food addicts who were no longer active in their addiction.  I was able to form a whole support team who held my hand, talked me off the ledge, who became my allies and eventually I was able to stop the cycle of binging, puking and self-hatred that went along with those behaviors.  By the time I gave birth to Emma I had more than five years of freedom from my food obsessions. (Which at the time seemed like a VERY long time!)  I had my wonderful support group in place and a road map of tools and behaviors to help guide me.  So when I began reading about “the GF/CF diet” and how critical it was to implement should Emma be one of those kids who responded to it, I had a lot of “feelings” about it.  There was no question whether or not I would put her on it, but I also knew I had to be careful because of my history and what it would inevitable kick up for me.  So I called in my supports, made sure I kept honest, made sure my “team” of recovered addicts knew what I was about to embark on and took a deep breath before plunging into that dark water, which I hoped might help my daughter.

I won’t describe in great detail what happened as I’ve written about the diet in detail, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  You can also go to the right hand side bar on this blog, type “diet” into the search box and you’ll be taken to everything I’ve written on the topic over the years.  The short version of all of this is – we saw little change.  Emma’s constipation was unaffected, there may have been a slight increase in eye contact, but not enough to warrant the trauma the diet was causing Emma, who continued to drop weight at a frightening rate.  I wrote about the trauma of the diet and it’s aftermath ‘here‘.  But I must add that her trauma was a significant and distressing piece to all of this.  It is one thing for an individual to decide they must stop eating something because they know it causes their bodies distress, or allergies that are clearly identifiable and another thing to put a non-speaking child on a highly restrictive diet that they cannot comment on and which is only deemed successful by a parent who is doing their best to watch for measurable changes.

As a new parent who is just embarking on all of this, what do you do?  It was overwhelming for me.  I remember vividly how frightened I was.  There was so much information, often conflicting and I remember feeling the stress and anxiety all that information caused.  I also remember feeling terrified that I was doing everything wrong, that I was harming my daughter, setting her up to have an eating disorder further down the road and since my eating disorder was all consuming and eventually caused me to contemplate suicide, this was no small concern.  I became convinced that there was a right and wrong way, that if it worked it was “right” and if it didn’t it was my fault because I had done it “wrong”.

I don’t feel particularly comfortable giving advice to other parents.  As I wrote in the first paragraph, this is one story and it happens to be mine.  It’s the only one I can tell, but that doesn’t mean it will be yours.  So here’s the only question I can answer – If I had to do it all over again (thankfully I do not!) would I have put Emma on the diet that first time?  The answer is – I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from.  I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.  There are enough people, regardless of their neurology, who have benefitted enormously from modifying their diet.  There are too many anecdotal stories of significant change from those who do benefit to ignore it as just another bit of quackery.  BUT, and this a big but, no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person.  Or as Karla Fisher gave me permission to quote her said, “… it can and may seem like the autism goes away but it is important to remember that it does not. The EF (executive functioning) and SP (sensory processing) issues get reduced but the context difference will always be there so child will always need support.” *Parentheses are mine.

So let’s discuss and if you disagree, explain why, if you agree, please say so because I really love being agreed with! 🙂  And if you have some other thoughts about all of this go ahead and say what they are, because this topic is one that comes up all the time and it is confusing, complicated and for new parents can be the cause for tremendous anxiety and worry, not to mention the upset and trauma it can cause our children.

Emma – November, 2011 – after five weeks on the diet

88 responses to “Another Topic of Controversy… No I am NOT Trying to Find Them, They Are Everywhere

  1. We have several reasons we’ve never tried “the diet”. (I love how you put it in caps, making it sounds as ominous and daunting as it is!)

    One, and this is the biggest. Simply put, we couldn’t afford it. Plain and simple, end of story. To implement the diet that the “experts” recommend costs a small fortune. Being on one income, we can scarcely afford groceries as it is. So, that was and is the biggest hurdle.

    Two – Risa has no known food allergies except for strawberries. We had a blood test done, fairly recently actually, that showed no sensitivity to anything. Joel’s mom swears that his behavoir as a kid was curbed when she cut out sugar, food dye, etc. And Risa has excema and constipation, as well, so my mother in law STILL, to this day, hounds me to try the diet.

    Three, what you said above “to put a non-speaking child on a highly restrictive diet that they cannot comment on and which is only deemed successful by a parent who is doing their best to watch for measurable changes”

    Risa is a good eater. She truly is, and we feed her a good diet. Up until about a year ago, she didn’t even care for sweets. Her big weakness is pop (like mother, like daughter) and we’re trying to cut that out of all our diets, not just hers. She never has more than one a day.

    Meanwhile, I don’t want her to NOT eat because I’m feeding her all sorts of strange foods. For a kid with autism, she’s a remarkably unpicky eater, and I don’t want to change one of the few things we have going for us! 😉

    All this being said, if we had the means to do so, I *would* try it. Just to say that yes, we tried it, and check it off the list, if nothing else.

    And just too add, I think that diet could be a driving force that *causes* autism. All the crap in what we eat and drink cannot be good for us, and it stands to reason that the autism epidemic took off around the same time we started putting so much preservatives, chemicals, hormones, and crap in our food. Again, if we could afford it, I’d feed my family nothing but organic, all the time. Unfortunately, that’s just not going to happen.

    In closing, I think that this is something they really need to look at. Especially since there’s evidence out there that it does, indeed, help alot of kids. It kills me that my daughter’s Medicaid will fork out over $1000 bucks a month for her medications, but God forbid we try to change her diet for six months.

    Better stop now and get off my soapbox!

    • So just to throw in a couple of thoughts – I have spoken to so many people, Autistic, non-Autistic, and all sorts of people in between, who have been helped by some sort of modification in their diet, almost every one of them agrees that having blood work done showed their sensitivity. If there’s no sensitivity, it didn’t show up. I know it’s almost impossible to NOT berate yourself for all the things you haven’t done, Angie. I do it too, but here’s the thing, there is a never ending list of things, it’s not JUST “The Diet” it’s – hook worms the”GAPS” diet, camel milk, detox foot pads, and and and and… We did have the resources to try any number of things, we did so many of them and now not only do we no longer have the resources to do them, but they made little if any difference! (I know you think they may have, and there’s no way to fully argue that) but I can tell you, we have a profoundly Autistic child who also happens to be fabulous and talented and smart and funny.

      The other thing I want to add is that the “epidemic” idea is one I absolutely was convinced of. But after reading so many books on this, I no longer am. One of the best books on the topic, in my opinion, is called Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker. It’s a terrific book and one I highly recommend.

      • I’ll check out the book at the library next time, if I can find it. But meanwhile…you honestly don’t think of autism as an epidemic? I’m not even forty years old, and when I was a kid, even through high school – autism was virtually unheard of. Now it’s everywhere. I know that they are better at diagnosing it, but even taking that into accoount, how do you explain the astronomical numbers? It used to be 1 in 10,000 – now it’s 1 in WTF??!!

        I do have a list of things I’d “like” to try someday. None of which are economically feasible, and nothing that would be guaranteed to help. 😦 Right now, we’re having a hard enough time just trying to keep her from hurting herself, and/or others.

        Did I tell you the latest? In the last year or so, she has gotten into this scary habit of pulling her blanket over her head. She usually sleeps on the couch, and during the week I sleep in her room. (I’m a light sleeper, Joel has to get up early for work.) Anyhow, obviously, if she does it while we’re in the room we pull it off immediately. But last nite, I woke up twice – and she had it over head both times. It’s truly starting to frighten me.

        I’ve tried taking away her “regular” blankets and giving her crocheted afghans, but she hates them. She’ll literally toss them off and go in search of her regular ones. Aside from not giving her a blanket at all, I’m short of ideas what to do! Her OT things it’s a sensory thing, like how she likes to “cocoon” in the hammock. So, I’m off to find something that might help.

        • Also, as a total aside – I think it’s very important that you’re tackling these topics. It’s not about looking for controversy, it’s about sparking discussion, listening to others, and doing the very best we can to help our kids.

          Maybe you could have a feature on here where a couple days a month, you have a few days of hot topics? Goodness knows there is no shortage of them!

          • How about a sleeping bag? The ones that have arms cut out. We have similar problem as my son slips under cover but does not always reliably uncover his head again and has seizures…
            I have found company who sells them for up to 10 year olds (they are in the uk).

        • On the blanket thing, I wonder if maybe you could find a way to layer multiple blankets to get the effect she wants while mitigating your concerns. I can’t stand sleeping with just an afghan myself, too drafty, but I like the weight so I lay it over another blanket for the summer. Maybe something similar would work for your daughter?

        • I have now got a running list I’ve begun next to my computer of “hot button topics” and I’ve just added the word – “Epidemic?” to the list. Listen, I don’t know. I don’t pretend to know. But here’s what I am finding as I continue along this crazy path we call life – epidemic denotes a crisis, it began as a scare tactic by Autism organizations intent on raising money. Nothing drives people to send in money more than fear. But is it true? There’s a great deal of controversy surrounding the word epidemic when applied to Autism. Here’s just one of many links about this – http://blogs.discovermagazine.com/crux/2012/07/11/is-autism-an-epidemic-or-are-we-just-noticing-more-people-who-have-it/ – written by Emily Willingham for Discover Magazine. I once believed without a doubt that the rates were at epidemic levels and that the environment had to be, at least in part, the cause. Now? I don’t know. Certainly people who once were diagnosed with “mental retardation”, “childhood schizophrenia” and the like are now identified as Autistic. In addition a huge number of people are being diagnosed in adulthood as awareness and our growing awareness of what “Autism” is expands. This is something that will continue to be argued though with no clear answer.

          • Lol, that’s me,always sparking conversation and controversy! 🙂

            I’m thinking of trying to find some sort of comforter i could sew up, like a sleeping bag without a zipper?

        • I don’t! I think that a lot of the differences have gotten more disabling, since there are plenty of sensory processing issues that a person in a less modern world would never have run into and there are fewer places that people can decide to go be a hermit and being good at social stuff is much more important that it used to be…
          Plus they re-evaluated a bunch of people with old diagnoses of other things and found that a lot of them are actually autistic, that study that found that ~1% of british adults fall somewhere autism spectrum, etc, and I’d go with it being a case of society changing in ways that makes it harder to be autistic and in ways that make us better at telling who is autistic anyways.

  2. A hot topic in our family right now. My son, by chance, is now being seen by an allergist/immunologist for an autoimmune disorder. He also has Aspergers/PDD-NOS.
    Unbeknownst to us, as an allergist and researcher, she had conducted some of the original research on the GF/CF diet in ASD. In some of her studies she did see a subset of kids w/ASD that have chronic gut issues (diarrhea/constipation) show some behavioral improvement with a restricted diet. She explained it to me that some of these kids have a delayed hypersensitivity to these proteins, causing inflammation. However she said one could test for this hypersensitivity by measuring an IgM response. If a child is sensitive, reducing the amount of casein and/or gluten might improve behavior and reduce inflammation. A complete restriction is not necessary, according to her. So we wait the test results and will proceed as needed.
    The point I wanted to stress is that yes, it sounds like there may be a subset of kids that benefit. But testing should be done first to determine a sensitivity, especially because its such a limiting diet. Even then, a trace of the offending food should not affect the child. This is advice from the doctor who conducted the research that many refer to when recommending the GFCF diet.

  3. thank you for sharing your experience with this. I am always curious to hear people’s experiences with the “hot topic” things within the community. I looked briefly at the diet after Charlie’s diagnosis but it didn’t seem to be aimed at any of the issues he struggles with. Also, shortly after diagnosis his doctor released this study. http://www.urmc.rochester.edu/news/story/index.cfm?id=2860
    which sort of sealed the deal for me.

    • Thank you for sending this link! 🙂 It’s so interesting (and utterly terrifying) to see the various articles out there completely disputing each other. I will add this one to the “related articles” at the end of the post.

      I have a number of Autistic friends who absolutely without a doubt know that modifying their diet has dramatically changed their functioning ability. One, who I am in almost daily contact with, I have witnessed first hand the difference it makes. But ALL have agreed a blood test shows their intolerance and inability to digest those foods. (I really wish I’d known all of this in 2004!)

      I think, as with any person, whatever their neurological make up, if they have an allergy or food intolerance it will make a huge difference in the way they feel. More and more people seem to increasingly suffer from all kinds of food sensitivities, so it would make sense that this would be the case within the Autistic population as well.

      However that does not mean ALL or even MOST will have these issues. But when they do, they may respond even more intensely than those not on the spectrum.

      • couldn’t agree more, as i sit here regretting my unfortunate choice of fast food for lunch 🙂 Food has a powerful effect on so many of our systems. I guess as a formerly overwhelmed and confused parent at first diagnosis, i just wish the diet would be disconnected from the idea it is a “treatment” for autism as I understood it initially and presented more as “hey, food allergies can cause all kinds of trouble if they go unchecked. It might be worth having some blood work done to look into it’s effects”. that would have made a lot more sense to me.

        • Okay, so this is THE SINGLE BIGGEST POINT, in my opinion about all of this. This was the thing that made me absolutely ape-shit, bat-shit (take your pick) crazy. It was this idea that this diet is going to make your kid no longer Autistic. I too wish it had been presented differently, more like – look lots of people have issues with foods and food sensitivities and an autistic child may likely experience those issues much, much more intensely, just as they do with so many things, like medications, it may be the same. That would have been more helpful for us.

    • Whenever I pass the freezer section at Whole Foods and see the “Gluten free/ Casein Free” Pizzas I’m reminded of my mother who used to make this amazingly delicious dense, sweet, chocolate souffle and as she placed it on the table before us, my father would say, “Here! It’s made of nothing but air!”

  4. Hi Ariane,
    Excellent topic, as always, thank you for bringing it. I also strongly object GFCF diet on the ground that a child can not consent to something like that. Who would impose such a diet without clear medical indices on a NT child? Of course, I am not advocating free range when it comes to food choices, but such a limiting option, especially for the picky eaters… What can one achieve is for a child to stop eating completely. When I talk to parents which claim that they are seeing marked improvements in their children behavior, mostly they are talking about alertness, better focus, etc. It all seems to me that children feel that they are in a great danger, so they need to protect themselves from whatever is coming next. These children are scared, I would say.
    My son stopped eating meat at the age of 3. These days he is mostly eating carbs (pasta, bread, pastries), milk and diary (various cheeses), selected vegetables – always green – spinach, peas, cabbage, lettuce and selected fruits – yellowish-orange – bananas, apples, apricots, nectarines. He has never tried anything red (tomatoes, watermelon), or when it comes to that any other color then the above. Occasionally, he would eat fish, but only in round shape 🙂
    However, his blood work is very good, he is happy and without any signs of ill health. So I wouldn’t change anything in his diet without strong medical evidence.
    All the best,
    Maja

  5. Okay…yes, this Is certainly controversial, and I like to steer clear of controversy. I will suck it up and chime in, however, for the good of the conversation. let’s leave it at that.
    In my 58 years on this planet, I have tried everything and anything to help myself function better, and support my immune system. While I have never had an eating disorder, I can only imagine how frightening that must be, and how it ties in with the responsibility of making food choices for your child, especially an autistic one.
    We are all different, autistic or not, and Autists are different from each other. Without going into my entire history of symptoms and nutritional/dietary regimes, I will simply say that I view myself as a neurological athlete, who must keep in peak condition in order to function at peak levels. I take this VERY seriously, and pay the price when I falter. I know very well what works and what doesn’t for me, but probably is not right for everyone. I do not suggest or recommend, but here is a peek at what works for me:
    1.I eat real food. No processed food, and avoid eating out as much as possible.
    2. Animal-based fats. NO vegetable oils, except olive oil on salads, but never heated. LOTS of pastured cream, butter, eggs, cheese, not milk, unless raw, and then I need to be careful. LOTS! LOTS!!
    3. No gluten=no earaches, or bronchitis. No grains, except a little white rice or rice pasta, means no anger. I eat potatoes, other tubers, and squashes,, and my one processed, junk food indulgence is potato chips cooked in LARD! No bread…that’s right, no bread. Once in a while I bake gluten free, but carefully choose my flours and recipes.
    4. Plenty of meat, especially grass fed red meat, and fresh veggies. Fruit, too, but I limit that, and no juice. Fish, too, and organ meats. Think old school gourmet French. YUM! Stocks, soups, sauces. No suffering there!
    5. Low residual. If I eat too much fibrous food, I am foggy and really uncomfortable, and don’t function well. I eat like a cat, and have just enough plant food for health, and know that my reaction to fiber is opposite from the conventional wisdom. It throws a wrench in the works. Lots of cheese is no problem!
    6. Limit sugar, but don’t avoid it. I eat 90 % cacao chocolate.
    When I am performing, I don’t eat the band food. I keep string cheese in my purse, and can eat nothing but that for a day, if needed, along with some potato chips. Not ideal, but gets me through until I get home.
    7. Coffee (with LOT of heavy cream). Coffee used to make me cry, but I’m old now 🙂
    8. Occasional champagne, but no real drinking. I can forget to drink water, so discipline myself to drink enough for proper hydration.
    It sounds expensive, but eating convenience foods and eating out costs MUCH more. I have farms nearby, so my meats are a good price.
    My husband eats the same way, as do my friends when visiting.
    If I falter from this, I pay the price. May not help anyone else, but nothing short of a miracle for puny me. My friends see it, too, and many have followed my lead, with good effects, autistic or not. I understand and applaud those who have found diets that make them trive, be it vegan raw foodist, vegetarian, macrobiotic, frutarian, or even good ol’ pizza and beer. I cannot break down many plant foods into a form my body can use, and so must choose an animal based diet. My blood readings are healthy. The cholesterol theory has been proven extremely faulty.
    My apologies for the rambling here. Touchy subject, indeed. I thought I would just share what works for me. XO!

    • Ah Chou Chou. We have spoken of this before, yes. Diet certainly has made a difference for you. Here’s what I hope for Emma. I hope that one day she will feel safe enough to experiment on her own, finding the things that may or may not work. So glad you found what works for you! XX

  6. We were very skeptical of trying a diet. I believe in science and I couldn’t imagine just trying out such a restrictive diet without some scientific proof it might benefit her. That’s just how I felt about it. My daughter is a very picky eater and it would have eliminated quite a bit of her diet. We went to see a developmental pediatrician who did a test, I can’t remember now what it was called but it was supposed to test something in her digestive system to see if the diet might help. It came back that everything was fine so she did not recommend we try the diet, which was such a relief. My daughter still has constipation issues but we try to just add extra fiber every chance we get.

  7. We gave it a whirl, My family here in NH and my folks in NM (dad’s an Aspie, too). The changes we saw were easily explained by Tyoma getting older. The diet did nothing but cost us money. You echo my thoughts precisely:

    ” BUT, and this a big but, no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person.”

    It is all about the wiring. Science needs to be our muse and evidence, solid evidence for each thing we try. I am proud of you for speaking out on this. I am with you 100%.

    Lori

  8. It seems obvious enough that if a person actually has food intolerance a diet change will help. What doesn’t seem sensible as far as autism goes is there are radical almost militant proponents of this diet who would push it as the solution for all. I do have gut issues. None that would be helped by this particular diet but I did have testing done to see which foods were most likely to be a problem as it is common sense that one less thing to deal with is a good thing.

    I think the fanatical element as far as diet and autism goes are just like any others grasping at some explanation or cure and wanting to give it benefits far beyond the obvious and scientifically supportable. Yes if your kid actually has a severe intolerance to either of those things and you remove them you are going to see some improvement. Sorry that does not mean those foods cause it or by every eating it your child is cured. That’s a scientifically supportable statement.

    You going to tackle secretin next? Now that was pure snake oil and yet 100,000 of thousands of kids were subjected to it.

  9. I love that you’re tackling all these topics 😉

    I read about the diet, heard about it when my child was as young as 2, and had tried to the extent that I bought a couple of hundreds of dollars of GFCF products, which all went to waste because these tasted awful (for the record, I tried everything I wanted my son to try) and my son refused them and, in fact, developed severe GI distress because of them.

    But my child had never shown GI distress: being a picky eater is not the same as having some inherent sensitivities to certain foods. (I suspect because of texture/particular taste more than anything: when I was young I would gag at certain tastes and even as an adult if I mix a mouthful of air with chewed up chicken – I would find the result too distasteful to swallow.) Thus I knew that a restricted diet was not going to change very much.

    However, I also know there are children (on or off the spectrum) who have gut issues like celiac disease, and these children will benefit from feeling better in general when their digestive tracks aren’t dealing with foods they cannot tolerate. ****But this ain’t gonna “cure” or “fix” their autism (!*100 – yea that’s 100 exclamation marks….)****

    I’ve known parents who go to the ends of their means doing diets and trying to “map” their kids’ brains via neurofeedback trying to figure out just what “allergen” is causing their kids autism.

    • Right – “what “allergen” is causing their kid’s autism.” That’s a lesson in futility right there! I have to just add here that perhaps the most destructive piece about all of this was that the diet was not suggested as something that might benefit all children, it was that the diet was presented as something which could potentially “take the autism away” or, conversely be the “cause” of their autism. That idea is more problematic than anything, in my opinion.

  10. I never even thought about trying The Diet with my son. It didn’t make a lot of sense to me that any kind of diet would have any effect on neurologic dysfunction. Perhaps those who have sensitivities to these foods would benefit as it would alleviate physical distress, but it wouldn’t do anything for their autism.

    My son I am starting to think is unique. He doesn’t have any bowel issues, never has, other then the normal occasional changes that are short lived for a day or two at the most, and we attribute that to a mild virus. But without any physical distress, changes in diet will have no change in him. I knew that from the start so I never even thought about implementing this diet for me son. He already self restricts his diet on his own since there are quite a few textures he cannot tolerate. I’m not going to add to that on purpose if I can help it.

    That’s just my thoughts on it. If your child does not have sensitivities to casein or gluten, this diet will not benefit them, at all. That is just logic.

    • Lara, I appreciate your thoughts on this. I often wish all logic hadn’t completely left me when I began looking into all of this years ago. Perhaps that will be the next post. “Why did logic leave me?” 🙂

      • I think logic has a tendency to fly away from us as mothers, when it comes to seeing our children in distress, particularly if you’re a new mom. My son is my youngest of 6 so I’ve been down the illogical road before with my older children. I’ve often found though, being illogical about things didn’t pay off so i changed tact.

        Having raised 5 NT children before my son, I could actually tell right away that he was different. We didn’t know why he was different at first, but at the age of 14 months when he lost his language and he began to pick up other little quirky behaviors, and as he grew older and missed more and more milestones, we looked it up and all of it combined pointed to autism. I pretty much knew even before he was given the diagnosis, but the diagnosis was something he needed, and something I needed, to make sure we both had a clear path to follow.

        I read everything I could about ‘treatments’ for autism, many of the big ones pushed on the Internet just didn’t make a lot of sense to me. The diet in particular because my son was never plagued with bowel issues and didn’t show any kind of sensitivity to food, other then texture related.

        I’m reminded of something my older sister told me one time, which I don’t agree with; Every child, up until the last born in the family, is an experiment, and then the youngest is the one where everything is done right. I actually laugh about that now seeing as how my youngest is so different from my other children so with him I was starting from square one, in all things. I haven’t the first clue on how to potty train him, and he’ll be 6 in March. He has the control, doesn’t go if he’s wearing pants, of any kind, but won’t go in the potty either, even if it’s been hours since he did. But as soon as the diaper goes on, he lets it all go. But that’s probably another blog LOL!

        • Lara – it’s so true. Logic leaves us, or I should keep it to myself, logic definitely left me! Your description of your older sister’s comment made me smile.
          I was trying to remember when we finally potty trained Emma completely. I documented it all on this blog, as I’d just started writing it and we began in earnest in June, I believe of 2010 when she was 8 and a half.
          It’s hard not to fall into fearful thinking with our children, particularly about things like potty training, food restrictions, sleep, but Emma does progress, she does reach these milestones, just not when expected. On the other hand there are other milestones she reached far ahead of what was expected!

  11. savvyadvocatemom

    I too struggle with a eating disorder, and I am doing my best to not mess with my kids’ food or appetites. One eats fruit, but hates veggies, and the other doesn’t like fruit, but veggies are always something she eats. I feed them whole foods for the most part, with some treats, no soda, and give them multivitamins. We take extra vitamin D since we live further north and sometimes don’t get enough sun. One of my kids gets extra iron in her vitamin due to results from her blood test after we were discussing pica with their doctor.
    I did have my daughter tested for food allergies when she was a baby due to her having chronic rashes around her mouth. Those came up negative.
    I guess I could never get over the subtractive nature of “the diet.” My first was always on the thin side, so that caused me to hesitate. My second was shown to have no allergies, so no reason to subtract anything.
    I think we all do our best and hope that we can do better than our parents did. Great discussion.

    • My mother’s famous quote to me, when I was pregnant with my first child, was – “Love them fiercely, show them, tell them that you do and one day, they’ll forgive you.”
      I’ve always loved that quote. Best piece of advice anyone’s ever given me! We will never do this perfectly, but we can keep trying to do better!

  12. Oh, diets. It’s the first question people ask me when I tell them that my son is autistic – have you tried “the diet”?

    Honestly, we’ve never even considered it even though my son has some pretty significant GI issues. He has vomited almost daily since birth, so we’ve done extensive GI testing – allergy panels, endoscopies, and barium swallow studies – to determine if there was a medical cause. None has ever been found, except that he has very severe sensory processing challenges and chewing/swallowing coordination disorder called dysphagia. So, we’ve had no medical reason to switch his diet.

    I like your quote on the fact that a diet is not going to make my son not autistic. I have heard of families who swear up-and-down that the diets work, but each and every one of them tells of symptoms that return once off the diet. That seems to indicate to me that nothing has really “changed” with their children, but that the diet – for some – works almost in the same way that cold medicine might; it might mitigate your symptoms, but if you stop taking cold medicine a day later, you will get a runny nose all over again. It doesn’t get rid of your cold, just as no diet can change the fact that someone is autistic.

    For my boy, even if we saw symptom improvement, I have to weigh the costs to him. His SPD causes him to have such severe reactions to unwanted foods that he will throw up. Do I really want to put him through the pain of having to readjust to new foods and wean off of the very few that he trusts? He only eats a few foods and is very brand-specific, so might he start rejecting food if I do a 180-degree turn with his diet? He is a little guy as it is – 30 lbs. at 3.5 years old – so do I risk his health by trying to force him on to a new diet?

    My thought is no, I don’t. I’m not sure that a bit of increased eye contact and attention are worth the pain and distress to him. Nothing that we’ve done – and we’ve tried a lot of very intensive therapy regimens – has truly been that “ah-ha!” treatment, so we tend to now focus more on giving him a happy life, supporting him where we can, and helping him grow to be the best person he can be and providing treatment and growth within those parameters.

    • Something that everyone needs to remember I think: autism is developmental delay, not stasis. As a child grows, they will also progress, in their own time, and be capable of doing much more then they currently are able to. So this, too shall (or may?) pass. When my son was 3 and a half, he was non verbal. He had a few signs we had taught him to let us know when he needed or wanted something, but eventually those gave way to words, and as he increased his ability to communicate the frustration of being not understood was lessened, so were the tantrums. Now, only sensory or emotional (when he gets excited or any other emotional extreme) over load causes meltdowns, and he is learning more and more how to self regulate when he feels himself spinning toward being out of control, he’ll ask for a break, or take a couple deeps breaths or ask for a squeeze. If he needs to stim, I let him, regardless of where we are, because stimming is a way the can deal with too much outside input.

      My son still has communication difficulties, mostly he repeats phrases and questions he has heard other people say to him, as he has echolalia, but he knows what they mean when he says them, and we know what he is asking for when he does also. I sometimes forget to remind him how to ask properly, because if he is reminded he will ask. That’s harder for me to remember to remind him because I’m so used to responding to the repeated question as him asking for something. While I definitely know not all ASDs are created equal, and just because my son has progressed as far as he has doesn’t mean everyone will, progression is still possible for many of our little guys and girls. If they are still very young, there is still a lot of hope. Keep up with the therapies. You might not see any difference now, but someday it may all just click into place for him and he’ll be quite a different little boy.

      • Lara, this is such an important point that cannot be emphasized enough. “…autism is developmental delay, not stasis.” Thank you for discussing this in more detail. It just cannot be stressed enough for all of us. I need this reminder!

    • Reinventing –
      It’s very tough getting those questions, whether its about diet or some vitamin or any of the seemingly endless remedies out there and they really are endless. When Em was younger I would get them daily if not more. I found it utterly exhausting and felt it was my duty to chase after each and every suggestion or referral. It was a horrible way to live and none of it led to an “aha” moment. My biggest aha moment came when I started reading and meeting Autistic people who were adults. That was a life changer!

      By the way, when I put Emma on the diet the second time she stopped eating almost completely. It wasn’t like she picked and just ate less, she just stopped. I’ve since heard from friends who are Autistic how horrible it was for them to be forced to eat foods that they just could not eat.

  13. “no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person”

    That is very true. But diet can really help in certain cases. My brother can’t eat any glutten products, and neither can some of my cousins, all of them on the spectrum too. I had horrible chronic eczema when I was young, and I still get it really bad in certain climates. But for some reason fasting for a couple of days makes it go away almost completely. I also have an autistic nephew who does not eat when stressed, or eats only certain foods. I have that same problem too. I guess the thing to know about diet is that the right diet can help alleviate symptoms of some of the comorbid condition that often accompany autism.

    • Agreed. I also cannot eat when I am very upset. To be told I “had” to would be futile. I literally cannot.

      For those who are sensitive to certain food and experience dreadful reactions to them, the changes they report are huge. It is very much on an individual basis, that seems clear.

  14. I have eating problems but not of the kind addressed by diets. I do have a grains issue but not with the gluten as one of the two kinds of grains that I don’t react too is very full of gluten.

    I have breathing problems when I consume too much of grain containing products and some gut issues with milk but since when I was young I could eat all the milk containing stuff I wanted I am thinking that’s just the usual age related dairy issue since humans are not really meant to be consuming it in the kind of quantities we do anyway.

    The main way autism and diet interact for me is sensory. When I am doing badly I cannot tolerate the textures of more and more food until at the extreme there is nothing I can eat. Applying a very restrictive diet to me at the outset would have compounded this issue as this sensory issue tends to come on after prolonged forgetting to eat. So lack of experience with the foods makes my ability to stand them go down and down. Of course if I actually had the sort of issues this diet helps it would be worthwhile all the same but that it is the first think out of people’s mouths because it helped so and so is sad. I don’t usually even talk to people like that which is one of the hidden benefits of autism. When you encounter stupid people and don’t want to bother even trying to make a dent in it they will just think oh that’s their autism when you walk off. Saves a lot of time and wordage.

    It’s true hyperbaric should probably be higher on your list than secretin as that was fairly quickly discredited and most people don’t even know the word now. The real issue though rather than tackling the cure of the moment one by one is making a dent in the must be cured mentality. It makes parents so vulnerable.

    The only autism conference I went to I was so mad that a large portion was a trade show full of the cure of the day approaches. I felt very protective of the parents I was with. They were people I met online and were with one exception meeting for the first time but years of talking online with them had shown they were not really bad parents, or even dumb just desperate to help their kids and so vulnerable to whatever was being peddled. People who organize conferences should be a bit more selective and protect their conference goers from being victimized. Is that too much to expect?

  15. I was under the impression the basis for GFCF diet for autistics was not due to specific allergy, per se, but due to inability to fully digest casein and gluten. The incompletely digested peptides were thought to have opioid like effects on brain. Anyway, it did not have a therapeutic effect for our daughter.
    In regards to diet and neurology ( I am alittle surprised at parent comments that dismiss any potential connection) – there are many examples of individuals that have defective enzymes which impair either synthesis or breakdown of various cellular components that can have neurological effects and are treatable with specific diet restrictions or supplements. The most well known of which ( all newborns are screened for) is PKU. There is a recent Nature article in which it appears that the genetic basis for a rare form of autism may result from an deficiency in specific amino acids.

  16. I know we are debunking snake oil here but there is actually some science as far a b vitamins go. Not as far as a cure but that B6 and B12 are important for brain function in everyone. Of course if there is no deficiency it may not need supplementation anyway but if the autistic person is a selective eater it’s not a horrible idea to supplement and as supplements go very cheap. I took them myself for eons as a doctor placebo. (A doctor placebo is something you agree to knowing it probably won’t help to keep your doctor sane and feeling he has actually accomplished something)

  17. I am sorry but I have not read through everyones responses just the first one or two.
    Both my children have quite profound autism. I have removed casein and gluten from their diet for many years now.My son now will decline foods that have gluten or dairy in them because he knows how they make him feel.
    It does not have to be restrictive- they get a rich and varied diet. When they do eat gluten or casien they experience severe diahroea.,Self harm, scream and are hyperactive. At first they seem happy and then they become almost mainc and then quite distressed. And yes that is my observation as” just a parent.” . I guess I am used to having to make observations of my kids often it is all I have to go on. Good luck getting anyone in Autstralia to run wonderful tests on your child if they have autism Apperently they have a “neurological disorder and so it is not uncommon to have gastro intestinal issues” so why bother i guess. They were tested in case they had Coeliac disease.
    No it is not a magical cure for autism. It was done under the guidance of a dietician who was not expecting to see any change so was quite surprised.
    If I had to do it all over again? I would have done it sooner to alleviate my daughter’s suffering. For the first few years it was just dairy I removed from the diet.I thought it “too hard to cook gluten free as well. When I finally adjusted the diet to gluten and dairy free at the age of 4 my daughter ‘s chronic painful distressing diarrhoea ceased..

    • Hi Liz,
      You were with me right from the beginning when I made the final last ditch attempt at trying the diet with Em a year ago. I know how profoundly it helped both your kids. And I know a great many others who have seen truly huge changes. Chou Chou, who commented above and who I interviewed less than a month ago, Aspie Kid and countless other Autistic people I know of personally who have changed their diet and benefited tremendously, profoundly. As you know, this wasn’t our case, but as I wrote this is only ONE story. There are thousands of stories like yours. I think the biggest issue is how these various things are presented. You and I have discussed this before. The idea that a diet or B12 shots or whatever it may be, while helping enormously, even profoundly, cannot and will not “remove” the autism. And as Gareeth mentions below so many of these things are presented as magic bullet solutions for ALL autistic people.

      So good to hear from you!

  18. I practically live on milk, pasta, and olives. While a diet change to eliminate something you physically can’t digest (happens for both autistics and not!) or which you are allergic to or which (insert medical issue here that says you should avoid it) is going to be helpful, it’s not going to help if there is no such medical issue.
    Fast food being horrible for your health is a medical issue, by the way.

  19. I think Elizabeth what is being objected to is the notion that a gfcf diet will help all people with autism. It gets presented as a magic bullet solution too often. No one (or at least I didn’t notice anyone) is saying that where there is an actual issue with those substances a diet can help.

    • I take this one step further and say that the point Ariane is looking to make is not to discount diets per se, but to debunk the myth that “something in the diet is causing autism, and therefore removing that from the diet will remove the autism.” that is at least my interpretation and Ariane will correct me if I’m wrong.

      If a neurotypical kid has a gluten casein sensitivity and you give that kid gluten/milk, that kid will experience severe GI distress and exhibit a lot of behaviors and if the kid’s mode of communication is primarily verbal, the kid will scream and cry and state that he has stomach ache. Taking these away will reduce the screaming and crying about the stomach ache and the kid will then resume daily activity.

      If an autistic kid has the same sensitivity and experiences severe distress because of the intolerance to these foods, and that child’s primary mode of communication is not verbal communication but other non-verbal modes of showing what the child is feeling (what we perceive as severe autistic presentations of tantrums, melt downs, self injury) — I see these as equivalent to the NT kid’s screaming and crying and verbal expressions of suffering. Taking these away will reduce the autistic child’s non-verbal mode of communicating that child’s severe discomfort and the child will then resume daily activity.

      • LOL! Jane, that was kind of hilarious. Yes, that is my point. I don’t think anyone is discounting that many foods cause problems for all kinds of people, some quite profoundly. There is evidence of this, not just in this comment thread but all over the internet. In addition to what you’ve said above, I see my daughter, again this is just one autistic child, who has hyper sensitivity in many, many areas, a small scratch can set off wails as though a limb has been amputated. I don’t for a second assume she doesn’t feel extreme pain. I know she does. I can see she does. It doesn’t seem like such a leap to then assume internal pain could be hyper as well. If a food was the cause of her internal discomfort removing it would reduce the discomfort. Where a NT child might feel mildly uncomfortable, an Autistic child might be in unbearable pain, add the issues and frustrations of not being able to adequately communicate, which might also add to feelings of fear and anxiety and you’ve got a kid who’s in a great deal of pain, physical and emotional.

  20. I would really like to see more research done on what seems, anecdotally, to be the observable truth that autistic people seem more prone than non-autistic people to allergies/sensitivities. Autistic people are generally prone to being more sensitive to sights, sounds, and textures; why not food and chemicals as well? However, this is different, entirely different altogether, from the notion that alleviation of food/chemical sensitivity triggers will reduce autistic traits or behaviors, or that autistic traits or behaviors are caused by food/chemical sensitivity triggers. I have eaten food that made me energetic, food that made me lethargic, food that made me desensitized, food that made me nauseated, food that gave me headaches, but never have I eaten food that made me a different person. That would be a magical food indeed.

    • Right, except that unfortunately much of the literature about these diets are centered on children, many of whom do not have speech or are able to communicate what they are feeling so then you would see “behaviors” that might be interpreted by their NT parents as vastly different from the happy kid who wasn’t feeling any hyper intense sensitivity. Some parents might even feel the change in the child’s behavior was so profound they believed their child had “receded” or whatever words are commonly used to describe a kid who’s withdrawn and silent because they’re completely overwhelmed by their intense feelings of discomfort.

      It would be great if more research was done. Personally I would like the research and findings to be done by Autistics so that we didn’t have to wade through the NT overlay of “interpretation” that seems to muddy things. Karla Fisher over on Karla’s ASD page is planning to do a series of slides on this topic, I believe.

      • Well, I have observed that when something is causing me discomfort, be if food or otherwise, it reduces my ability to suppress the tendencies that I suppress most of the time. But that doesn’t mean the absence of the food/stressor makes the tendency go away.

  21. I have things that help me (or seem to) with sensory issues. I will not say what they are because I don’t want everyone to run out and buy something thinking it will cure their child of autism, I am not cured of autism, nor do I want to be. I do want to have less sensory overload so that I can stand to wear my clothes. It is not The Diet (GFCF). I am pretty sure that the few things that help with sensory overload actually *are* helping, but not 100% sure. I have never had any bloodwork done and don’t know where I’d go for reliable bloodwork, nor can I afford it. I work better when ADDING things to my diet, rather than taking things away. I don’t remember to eat enough, often, as I don’t feel hunger much, so it makes more sense for me to add some supplements rather than to cut out stuff, or I won’t be eating anything at all. I will also say that the supplements I take are mostly vitamins and mostly easy to obtain and nothing exotic at all.

  22. Ariane,

    Great post as usual. When I was working as a behavior therapist (in my early days) I saw families that chose the gluten-casein free diet for their children. There was by no means any consensus on the actual effectiveness of the diet…even from each family. Some said it worked and some said it did not. I did not see in any of the families I worked with a miraculous turnaround. BUT…my brother in law, when he was young was also on the diet and while I was not around during his youth…seemed to benefit greatly. He is now 18 years old and is able to eat anything he wants. You are right…diet is such a personal decision and should be handled with care (especially with children). I suppose if I were in your shoes…I would want to try anything that I thought would help.

    Take care,

    Tim

    • Hi Tim,
      Thank you so much for commenting.
      Yeah, it’s tough because you cannot know it’s going to work until you try it and though many say blood tests are critical and that if the food intolerance doesn’t show up there’s no point in doing the diet, yet there are plenty of parents who say otherwise (I’m learning here). For a new parent, (I don’t envy them) it makes it such a difficult and painful decision.

  23. We looked at the diet for all of 5 seconds. The year was 1996 and the availability, at least where we were, of foods for this diet was almost non-existent and when I could find them, well, they cost a small fortune. Teddy ate about six things, non of which would fit with the diet and I thought to myself, this will be a living hell! So, in February 1996 we went to the doctor, got a RAST test, which at the time was the recommended allergy test and has the full spectrum done. The results, no food allergies, just allergic to dust mites and cats. So, we have never had a cat and put dust mite covers on all his bedding. We also did a Leaky Gut Test and those results came back negative. Could there be more we could have done, I think there always is, but I have always seen autism, actually life in general, like a buffet, there are plenty of options available, some of those options appeal to some more than others. We have put on our plate that which appealed to us. But the ability to do something more, or better? That could be said for everyone. I could always stand to eat more vegetables…

  24. Ok I’ve read some of it but not all. But my real thoughts on almost all of thease issues that well meaning moms have is ” what has your doctor told you? What medical tests have you done?” I loved the post where the mom explained that her son is has something medical going on. Loved the links she put up as well. I have to say if you are not having any food related issues then why change your diet. I have a question for all moms out there. Do we as ASD moms across the world have adequate health care. I was told about diet changes from other moms and given a sales pitch from a person selling products. But when I went to constant my Doctor, my Doctor asked questions about medical digestive issues. Tests were ran. From those test I was told I don’t have to do “the diet”. How ever all my child’s real medical concerns were addressed. I was told what was typical to ASD as well as what is his health. All things discussed made me walk away confident that I was making the best medical decision for my child. I was also told that I could not be stoped if I tried ” the diet” and that some moms love the diet plan and feel it helps their kids attention issues. But there is no real evidence yet that it works for all. This brings me to the thought that a person is a person first not an ASD person. You can have ASD and have many medical issues that many people have. I can be a diabetic and have heart trouble. All would require a special diet but none of why I need a specialized diet would have anything to do with ASD. I would walk away feeling better when I changed my diet and my behavior would change. ( no longer sick I might be feeling better) but all my ASD would be the same. I’ve tried fish oils not cause my doctor told me so but because I was told that it improved concentration and behavior. But at the same time I was teaching my child self regulation techniques. When I saw improvements I told my doctor. Now try not to laugh ok but ,my doctor tried not to laugh at me, ( I watch body language as well as listen to what I’m being told it can help me understand the situation, so yes the doctor was trying hard not to fall down laughing at my new medical findings) my doctor explained that I was also using self regulation techniques and that it could be that my child has learned them. Lol so I got rid of the fish oil! Hey guess what the doctor was right. He has learned how to self regulate him self in a positive way. Hopefully that silly story helps moms think about consulting their doctor. And not consulting doctor mom. That maybe we should really think do we have proper medical care? Do we have good doctors? Are we listening to them? Are we by skipping the doc and practicing our own medicine? Why are we not trusting our doctors? If it’s not been proven that you have something medical then why are you doing it? I’m all for heal they self but we can get up to a lot of folly just because we think we know best.

    • This is such a great comment! I’m writing a post now quoting from it! These are excellent questions. Thank you so much for writing this. Lots to think about!!

      • Just saw this after I made other post. Other post is Just my continued thoughts. I know I’ m a weird one eh. Always got some stupid take on life. I will be very interested to see your other blog post. I’m hoping it will be based on health care. This is the prime issue that is important to many ASD families and also families that are challenged with other health issues. Different governments have different approaches to it. Thus is a very hot topic for your election time. So I look forward to your thoughts on health care reform. A topic that truely needs to be addressed.

        • Oh dear… well you’ll be disappointed I’m afraid as I did NOT discuss health care reform. It is something I would need to do an enormous amount of research in order to say anything even remotely intelligent. But I did discuss some of the comments including yours that are relevant to yesterday’s conversation and that I wanted to be sure I addressed. Health care reform… really? Off to do some research.. 😉

    • Ok I forgot to add a few silly points. The reasons behind me tring the fish oil was Doctor mom. There are three people who float around the medical community that are well meaning but are making havoc everywhere. Thease people are wonderful. They can also be damaging to others.
      1. Nurse mom
      I’ve played the part of nurse mom a lot. Oops sorry to all people who I got it wrong for. Anyway this mom tells you their opinion but always says things like ” I’m not a Doctor but….” and ” what has your Doctor told you”. Nurse mom is an ok person because they often lead you back to your Doctor to get your real medical questions asked. Yep that was me in the response up above playing nurse mom. This lady how ever may get you laughed at by your doctor. You may ask a question and your doctor may think where do you come up with this stuff. Please do nurse mom a favor and don’t give her name! Cause you never have to follow what nurse mom says to ask your doctor about.
      2. Doctor mom
      Doctor mom is very awesome but one dangerous person. Why? Because she is often educated and has way more facts coming your way. This person often Can make great havoc in the medical community by printing books and other stuff. They put careful disclaimers out as well. This way they are not responsible for their medical advice ( one Dr. Mom comes to minds initials are JM, who writes a lot of books). I think all moms should understand that this mom often has a degree in google. They are often on Facebook and all over the Internet. They sometimes don’t take no for answer. They may believe they got xray powers from google search. They give blatant advice based on only a few symptoms. They are a doctors worse night mare cause they may even sell you stuff. They get large followings because a few people will get results. Often DR mom has a good bit of power but accepts very little responsibility. I’ve met many a Dr mom. Nurse mom is better cause she leads you to a dr. Dr. Mom sucks cause she wants to be your dr.
      3. Psychiatrist Mom
      This person may not be even a mom but is in all of us. If you’ve been posting crazy saying of mental health and advice on facebook then you have become this person. One or two ain’t bad but if it’s your idea that if you don’t share this new found thought process with the world then you will explode, then you are in dangerous territory and may have become this person. This person is dangerous because their Facebook psyc is ment to play on your mind. Some use it to manipulate love ones on line or to up lift others. The first is bad but second is good. The good news is the psychiatrist mom is easy to block out you can take her advice or leave it. No harm done.

      Their is nothing wrong with being this type of person a little bit. Once in a while being Nurse, Dr. or Phyc mom is ok. Might even help people but when we take over for the true medical community we have a problem. We may steer a person away from what truly helps them. It’s ok to be thoughtful and recommend what works for you. But ASD moms out there. Remember we are humans first ASD is just one part of your body. The body is individual. It is complex. We have Doctors for a reason. We should question all medicine because we are responsible for our self but we have to be careful not to distract from the medical judgement of a good doctor.

      • This is both very funny and very relevant to what all of us go through as we try to help ourselves and our children regardless of neurology.
        I will have to study this list and make sure I’m not falling into one of these categories, though I’m pretty sure I have dipped a toe into all these various ponds! Well, except I don’t have the kind of power, following or anatomy of JM. ;D

  25. Well there is something to be said for a great pair of boobs! I think we all can say we dip are toe in a few ponds once in awhile. We are human. One day if I got the time I will tell you a great story about how DR mom has put great havoc in my life. Hopefully we all hang out in the Nurse category. Because nurses tell you to see your doctor. Let’s all make appointments to see our doctor today! Lol when they get tired of the unnecessary line ups that my nurse mom qualities bring they can ring my neck. I send a mom to the doctor all the time. I’m so guilty of this. ” it could be an ear infection, have you seen your doctor!”. ” those symptoms are very serious, what has your doctor said. Did you ask him about ( tests, drugs, therapy, or some new part of medical ) well you should” I’m the butt who keeps their offices stuffed full of people going are you doing enough for me. Im tring to stop my Nurse mom qualities but I can’t seem to get them under control. But the only time nurse mom has a problem is if the doctor she sends you to is Dr. Mom or the Miss JMs of the world. Really looking forward to your next post.

  26. Do what I did. Take your kid’s teachers out for a drink and ask them about this when they let their guard down.

  27. I have so many people trying to convince me that I MUST, MUST, MUST go on a gluten-free diet “because you’re autistic.” Never mind that my doctor (who has celiac disease himself) tested me and pronounced that I do not have a gluten intolerance. “Doctors lie,” I was told. “Doctors don’t know anything about gluten-free diets,” I was told. “Try it anyway,” I was told. Why? I already have to watch my diet due to my diabetes (which, by the way, also increases my chances of having a gluten sensitivity for some reason.) I don’t want to give up food that I happen to like just because some people benefit from a gluten-free diet. Just because it benefits you (generic you, not you specifically) doesn’t mean it will benefit me.

    Now, I do believe that if a child (or an adult) has a food intolerance, then yes, eliminating that food will probably improve his/her behaviour because he/she will feel better. That does not mean, however, that said child is no longer autistic, as you point out here.

    • Hey, thanks for reaching out.
      We, too, found the pressure from others enormous. Well meaning people told me story after story of a child who had made “miraculous” progress. People have sent me links and articles about incredible changes from children put on this diet. I was also told that Western medical doctors were uninformed or unwilling to look at alternatives that might work, this was coupled with stories of children who were now talking, being mainstreamed etc. It is a very slippery slope and I have no answers, even after going through all that we have gone through. Looking at the comments on this thread, makes me wonder again if I would not have “tried” it all anyway. How can one see one’s child in such agony and not try just about anything? That becomes the issue.
      I so understand and relate to what you’ve written. It’s difficult to face that insistence without feeling defensive and not constantly defend oneself.

      • I gave my son jelly beans, marshmallows, chocolate and mac and cheese (he did eat other things too, these were treats, I’m just making a point, hehe) and he’s talking now and in a mainstream school also. Maybe I should write a book or start recommending these things be fed to autistic children.

        The way I see it, autistic children are physically just like other children (unless there are co-morbid conditions that can possibly affect autistic behavior), with their senses turned a little higher and they see and understand things differently. I don’t think anyone would recommended putting a neurotypical child on a GF/CF diet if they happened to have some tantrums, unless it was found they had an intolerance to those things. Having autism doesn’t automatically mean bowel issues, and not all bowel issues are caused by sensitivity to gluten or casein either.

        But how to you politely explain to someone who doesn’t really ‘get it’ that since your child doesn’t have sensitivities to those things, nor does he have any bowel issues at all, there is no special diet that would benefit my son? There are some people that are so convinced that they are right that there just isn’t room in their small mind for any other alternatives, and it can be irritating.

  28. I definitely agree with you. I am on the spectrum as are my husband and daughter. The only reason we are gluten free is that we all have celiac disease. We also get blood tests for our food intolerances. We each have several of those. We are all still autistic even being off of those foods but we are a little less irritable and feel better in general. We got our diagnoses of autism after going on the diet anyway! I used to get horrible dizzy spells before I was diagnosed with celiac and thought I was dying. I would never put someone on the gf/cf diet without proper testing. It’s not necessarily healthy for people without the celiac or intolerances to eat that way.

  29. I don’t get why ppl think GFCF is restrictive? One can change their diet to GFCF without restricting a thing! Substitution yes, restricting no! Difficult at first, yes. Takes lots of xtra time, work & food preparation. But it gets much easier, faster, & enjoyable w time. Expensive, yes. But even that can be managed. With time, knowledge & experience one finds ways to purchase only what’s needed, where it’s sold cheapest, & cook meals using as many ingredients that are naturally GF. Just like reg food shopping u look for sales, compare store prices, best tasting brands,etc… Another thing u have to realize is when u see ur child get better & that the efforts u r making really help him, that in & of itself becomes a huge motivational force that drives why we do what we do. Its like how a kid doesnt want to play a game bc they think they wont do good and lose but once pushed to try they start to do really good. When they r winning against their opponent, all of a sudden they r having fun & want to continue playing. U know?
    When a parent says they r afraid their child will have nothing left to eat bc they r so picky & they think it will neg affect their health, I want to them to understand that when done right, that’s not going to happen, infact in our case & many others its the opposite result: my son’s diet changed for the better. His appetite increased, he desired to try new foods & learned to enjoy healthy real food. Like his taste buds suddenly started working. As his food groups variation increased, the nutritional benefits became more visible. Diet affects behavior. Without a doubt. The stomach affects the brain. The physical state of the body determines the performance factor of the mind. Theres a reason why one shouldn’t drive after a few beers. Theres a reason why everyone lounges around napping & relaxing after stuffing their face w thanksgiving dinner. Theres a reason why one gets dizzy & lightheaded & unable to think coherently when extremely hungry. Or sluggish & tired after a heavy meal. Or hyper, moody & silly after eating a bucket of Halloween candy. Yes, eventually his new healthy diet gave way to excellent eating habits providing optimal nutrients for brain function. Add crucial vitamin&mineral supplements and u r bound to see positive changes in behavior. Once his GI symptoms lessened, sleeping improved, better sleep leads to sharper cognitive awareness, focus & attention. Why is this important? Besides the obvious, this is necessary for a child’s therapy to be effective. No longer in pain, he began to truly enjoy & fully participate in speech therapy, OT, at school, at playdates, in the park, in the stores, with family at home, etc… U see, the 6 foods ur kid currently only eats they r most likely addicted to. Yes, choices based on sensory/emotional needs exist. However, there is a physical component to this. The foods they desire r the foods they feel craving for. Sometimes intense craving. My son was a carboholic. He only ate white/beige foods&was highly addicted to cows milk drinking way too much for his nutriional need. He craved bread,pasta,cookies,cake,fries,nuggets,cereal,crackers…. All the foods w high amounts of gluten! His body can’t digest gluten. Those who cant digest gluten or casein have either inflammation of the stomach lining (celiac) or an intolerant leaky gut due to a damaged area of the stomach wall. Undigested, it gets absorbed into the bloodstream. The blood carries it to the brain w the vital nutrients, only these gluten peptides r not supposed to be used by the brain. They r supposed to be digested by way of gut & continue on the intestinal path of waste to be excreted. Carried to the brain, these peptides find their way straight to the opioid receptors, causing the child/person’s brain to react as if they r receiving opioids resulting in unpredictable behavior ranging from ecstasy like feelings, to aggression. Just like an addict craving Vicodin or OxyContin gets physically addicted, gluten feeds these opioid receptors the same way, hence the addiction like repetitive vicious cycle of only eating specific foods over & over. Ppl who could digest gluten&casein do, before the remaining nutrients get absorbed.
    Carbs give that sugar high then the ugly horrible feeling low. So we eat more & more to get that high again. It’s also a vicious cycle. Kids w this issue like my son usually have yeast issues in the gut. Candida the bad bacteria is rampant. It paves the way for persistant, chronic constipation. I have this issue myself. I’m a carboholic. Good probiotics do wonders. Prunes, prunejuice, salad…. Plumsmart is the best product-works like prune juice, tastes like grape juice. Thank God my son loves it bc he needs a cup a day to stay regular. I hate to say this but it’s true-the conversation always turns to shit! Haha (no, u never heard this saying? Aww shit.) lol My sons well being & behavior are in direct relation to his poop. When he can’t sleep and winds up stayin up all nite, it’s bc his stomach bothers him-gas,irritation,pains. This happens when he has a diet infraction eating gluten by accident. Once he finally gets his system cleaned out (w lots of help), then he can finally sleep easily & comfortably. Several times, he actually fell asleep right after. Yep, went from sitting on the toilet to sleeping on the couch within minutes! (Ofcourse all cleaned up)
    My son eats better than our whole fam. We all say this kid eats like a king! There’s not a fruit this kid hasn’t tried & loved. He enjoys desserts like chocolate covered strawberries, baked pears w honey&cinnamon, coconut ice cream w carob chips, whip cream & cherries on top, roasted pineapple w whip cream (OMG SO GOOD!) He eats steak, salad, & sushi! (I don’t even eat sushi!) He loves his Italian food-gnocci w pesto sauce (yes they sell frozen GF gnocci & ravioli) spaghetti&meatballs,lasagna,balsamic chicken w bruschetta. (best GF pasta is Tinkyada) He will eat carrots, corn, cabbage, zucchini, squash, eggplant & almost any soup. At parties he’ll have Raw veggies & dip, shrimp cocktail, fruit salad, & the usual chips, popcorn stuff just GF pretzels. During xmas time we italians make alot of fish. This kid has tried (& liked yuck) scallops, clams, mussels, octopus & lobster. He asked for lobster almost everyday the rest of that year. Lobster fra diavolo over angel hair to be specific. Lol One time over this past summer he said he wanted to go to a restaurant w a balcony, sit outside & order “tapas”!! Haha he is too funny. He likes roasted chicken, rice n beans, tacos, paella. He LOVES all mushrooms & we order his burgers when out w portobello mushrooms instead of a bun if not lettuce wrapped. And fries ofcourse-did u know in-n-out burger & carls jr fries r GF? Red Robin now serves GF buns! He is currently obsessed w Chinese food & Chinese culture& he asks at least once a day if he could go to china to eat noodles. Lol His fave is shrimp chow mein.(rice noodles) Recently tried pepper steak w rice. And we make kiddie faves like-chicken nuggets, fish sticks, pizza, Mac n cheese… We just buy the GF brand. Or we can make GF eng muff pizzas or make w GF crust, make my own Mac n cheese. We make him gr8 GF blueberry pancakes, vans froz waffles, apple gate farms bkfst sausage…
    UDI’s is the best GF sandwich bread-I make him a perfect grilled cheese, pb&j, turkey sandwich….UDI’S also makes gr8 muffins, brownies & cookies. Or I make my own-I’ve perfected the GF vanilla golden cake/cupcake. Made awesome walnut brownies w coconut oil. Like I said-he eats like a king. And he enjoys it like one too. But this did not happen overnight. When he was 3 he wouldn’t touch a tiny peice of even diced fruit! It’s a process & it’s been a lot of work for sure. But totally & absolutely worth it!!!
    The one&ONLY food he refuses to eat is broccoli. He will tell u-I don’t eat broccoli, Evan eats broccoli.(his bro) haha love that kid

    • @Thinkingmomma, it’s great that the GF/CF diet helped your son with the digestive issues he was having, which improved his over all sense of well being. However, it is still important to remember it doesn’t actually do anything to affect the actual ASD diagnosis. For some people without digestive issues, it doesn’t make sense to put them on this diet because it wouldn’t do anything for them.

      There are also many different foods out there and many different things that a person can be sensitive to without being allergic to, aside from gluten or casein. So even if a person with digestive issues did go on this particular diet, they may not see any improvement in their particular symptoms because what they are sensitive to is maybe corn, or rice or perhaps even nuts, it’s difficult to say. And a sensitivity wouldn’t show up in an allergy screening. It would then become a matter of trial and error; eating different things one at a time that they normally consume, and see which ones cause them the distress. It’s very likely that it isn’t gluten or casein.

      My own son it would appear is sensitive to poppy seeds. He had a slice of 5 seed toast today and the only thing in it that he hasn’t had before is poppy seeds. It caused him some pretty severe diarrhea. But he typically doesn’t have any digestive issues, so I’m fortunate that I was able to catch that and told myself, I’m not buying that bread again (it was cheap).

      The entire point of this blog, I believe (please correct me if I’m wrong) is the mind set that the diet will cure autism. It does not, and will only in fact benefit those who have allergies or sensitivities to these two particular things.

      • Thank you Lara for so beautifully stating one of the points of this blog – to discuss and dispel the so-called “cures” surrounding autism that cause so many parents (I was one of those parents) to go down that dark road in search of an illusive remedy. This blog is very much about my journey, but it is one that resonates for a great many. My reasons for offering it are with the hope that others may avoid the pain and distress we experienced in our relentless pursuit, sapping us of much needed energy and hope.
        @Thinkingmomma, I am so happy the diet has benefitted your child. As you have probably noticed, many of the commenters and followers of this blog have as well! That is, after all, what we all hope for, to find the things that help all of our children flourish.

  30. Ok so did you guess I was talking about this blog post? Hope so. When you start a topic you start a topic lady, holy man do you ever!
    I’m so glad I’m not the only one who rambles on your blog spot lol. To the person up above thanks for the tips and grocery ideas, but I hope you’re in touch with your inner nurse and not your inner doctor. If you read my post up above you will see that your inner doctor is pure trouble. Inner nurse should be able to accept that your medical is only your own and still be asking someone to consult a doctor. Your inner doctor says screw the doctor I know better, please follow me. By the powers of google I have seen your intestines and know your digestive system. I know all your genetics and all your health. With my google powers I say only a diet change is needed. You will not need any other medication and most definitely not an operation. If we have entered doctor mom territory we are dangerous to others.
    I base my thoughts not on this diet in general but on something else. Some of my experiences with Dr mom. There are many health issues that can be missed if we are not careful. We can Dr mom someone who needs real medical attention and make them not get the medical attention they deserve. So to all doctor moms, if I have a more major issue with my bowels and you give me care, are you going to accept the responsibility? Or would you rather I go to a real doctor so they can look at my body? Note to all – Dr. Mom can’t preform surgery and if you really needed one then only a real doctor will be able to help you. Last point I swear!
    When we say I know an Autistic you just know that one! Every person is a unique person. With a design unto itself. Would you go to a doctor that treated you like this:
    Bobby: I’m sick, I feel a pain in my left side in my chest…..
    Doctor: well Jane had a pain last week and….
    Bobby: I wasn’t finished, I feel a tingle a numb sensation in my arm and…
    Doctor: that’s nice Bobby but now about Jane well she had a pain in her right arm and I gave her this pill. So I will write you the same prescription.
    Bobby: I said my left side and about my arm ….
    Doctor: left, right, what’s the difference? I saw Jane last week and her pain is gone….
    Bobby: don’t you think you should at least look at it? Run a test or two, anything? By the way the pain is on my left side…
    Doctor: no need to run tests I can tell just by looking at you that your pain is the same as Jane’s and I told you this pill will work just fine.
    Bobby: ok I’ll take the same medication as Jane but it really is my left side not my right.
    Doctor: good man! Next!
    Does that seem reasonable to anyone? But that’s what we do. I know someone with Autism or I have Autism so my health is the same as yours. All of my experience is the same as yours. No need to listen to the individual. Just follow me.

  31. I totally relate to your original post. I have a similar issue because one of the things that helped Seth was kinesiology. I like kinesiology and it’s helpful for Seth and for me – but I’m not a kinesiology evangelist. As much as we mums would wish it, there is no magic key and anyone who thinks there is is either convincing themselves or praying our hopes for our children.

  32. The short answer is that Kinesiology is a manual therapy technique that works with muscle memory. It’s like non-verbal counseling. Seth said his first sentence in the kineoso’s office “I love dogs!” but I also know that kinesiology is very much a mystical spanner to some people. Good luck!

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