Autism Cuppa

The Autism Diet Wars

I’m  going to come right out and say it: some of you may be ticked at me for what I am going to write today.  I am sorry for any hurt feelings I may cause but I am going to write about it anyway. Now back to our regularly scheduled Blog Post.

So.  There are a couple of reasons I am writing about Autism Diets today.

One reason was an unpleasant encounter with a Civilian* when My Kiddo and I went out to lunch the other day . We went to one of the very nice, homey, trendy lunch places that have sprung up in our suburb.  Kiddo is known around town from his many years in the community and working off and on as a stocker in a local grocery store. Everybody seems to know him somehow, including our waitress in this new local sandwich joint. Looking over the quaint, old-fashioned and charming menu, I ordered a peanut butter sandwich on whole wheat for him.  A PB sandwich was the only thing he would eat on the whole menu or would be able to, since he is on a very specialized diet for his migraines.  If I had known exactly how old-fashioned (charming, quaint and retro blah, blah, blah) this place was, I would never have taken him.  As it was, on the way home from his day program, I decided he and I needed a treat and we stopped for lunch on a cold day.

Anyway, our waitress knew Kiddo from the grocery store and knows he has autism….and just about took my head off for ordering a peanut butter sandwich on WHOLE WHEAT BREAD because didn’t I know WHOLE WHEAT BREAD has gluten in it and people with autism should NEVER have gluten?  I told her I know bread has gluten in it and gluten doesn’t bother him.  She suggested the soup……I asked if it was homemade or came from a prepared stock….she didn’t know and I made her check. The soup had a prepared stock base and had YEAST EXTRACT in it which actually IS poison for Kiddo.  So I insisted on the PB….and she asked if I meant PB&J and I told her no jelly because he can’t have jelly on his anti-migraine diet. I asked her to bring me two pieces of bread and a jar of peanut butter and I would make the frickin’ sandwich if it was so much trouble.  She brought me the damn sandwich and muttered about trying to protect Kiddo from his ignorant mother….hand to God…I am NOT kidding. Kiddo took a bite of his sandwich and gave her one of his most glorious smiles–take that, Alice! Needless to say, we won’t be going back there and I’ve told everyone I know (so far) not to go there either.  I called the manager as well and he was not really sympathetic. Was I a bitch about it? I don’t know because no one has ever called my intelligence in question and then accused me of trying to harm Kiddo with my choices. How would you have reacted?

The second reason is something The Youngest noticed at breakfast this morning.  His Cheerio’s box proudly proclaimed it was “gluten-free”….wasn’t it always?  As well as the brand of salsa we buy and the corn flakes.  The gluten-free labels just seemed to tick me off today, fresh off the PB sandwich debacle.

Since I’ve been in this Autism-Biz for over 30 years, let me give you a bit of history about the Gluten Free/ Casein (dairy) Free diet…it’s been around since the late 1980s.   Called GFCF, along with the elimination diet (for ADD/ADHD), it’s been used and abused since I became involved in autism advocacy.

We tried the GFCF diet when The Kiddo was nine and it was the longest six weeks of my life.  When you have more than one child, it was (is?) suggested you put all your kids on the diet.  Kiddo hated it and wouldn’t eat, the Middle Boy cried for his Oreos and pasta and the Youngest wouldn’t eat anything and lost weight….he was five and on the small side to begin with.  It was difficult to maintain since those were days BEFORE you could buy gluten-free cupcake mixes in the grocery store, and it was expensive.  All of those things would not have mattered if we had seen any difference or improvement in Kiddo’s behavior and we did not. I was very, VERY strict and conscientious about following the rules of the diet. So strict, Hubby (who was finishing his doctoral work) ate most of his meals in the school cafeteria! We were told we would see benefits within four weeks and managed for six weeks but there were no obvious benefits.  We have been scolded by other parents of folks with autism of not staying on the diet long enough or being strict enough to make a difference. But when The Youngest began to look unwell from not eating (he wasn’t a big eater as a small child), I just couldn’t do it any longer.  We also tried the elimination diet, it wasn’t as horrible but it was not pleasant AND again, there was no difference or improvement in Kiddo’s behavior, so why bother?

The only diet which has made a difference in Kiddo’s behavior and life has been a diet prescribed by Kiddo’s primary care physician.  Kiddo’s migraines seem to be food related and as soon as we got him on this tyraemine-free diet, he has been the charming, sweet person he has always been.  He’s been on this diet since 2008 and has just gotten better and better, the stricter we are with him. The whole journey on how we got to that point is a Blog Post for another day but diet can help….but it has to be the RIGHT DIET for that PERSON, not just any ol’ autism diet!

 

* A Civilian is a person who has no contact with anyone with autism on a daily basis.  Many *kind* civilians claim to understand and support those with autism and their caregivers.  It has been my experience they brag to their friends about their support of people with autism etc. but rarely actually do anything to support those with autism and their caregivers. They think they know everything about autism because they’ve Googled it…..and NO THEY DON’T!

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autismcuppa

Your Autism Cuppa is written by a longtime Autism Mom. A former Autism Society of America local chapter president, she is an educator and artist and has done inclusion consulting work for over 20 years. Married for 36 years to the father of her Three Sons, the eldest having autism, she wants young parents to know they are not alone. Life can be fun!

9 thoughts on “The Autism Diet Wars”

  1. I totally agree with you that nobody should have the right to lecture you on your son’s diet. Our family is GFCF because we HAVE seen changes. My son was 2.5 when we first started and we saw HUGE changes within 24 hours – within a week he was a different child. Being the scientific person I am I refused to believe diet could make that much difference, so after a month we put him back on gluten (no way was I doing dairy and having that explosive diarrhea again) and I lasted all of 4 days before I couldn’t stand it anymore and took him back off gluten.

    We didn’t notice such drastic changes with the rest of the family (it takes 6 months to clear gluten out of the system so is usually a slow change) but we certainly have noticed differences with dairy and gluten for most of us. We’ve also done intolerance testing (woowoo for most people) and saw big changes with that (especially with potato)! I have a friend who went GFCF and saw great changes, but her child turned into a skeleton during it, so it just wasn’t worth it.

    Do I recommend to others that they should trial GFCFS(oy)FC(orn)F? Yes, as you’ll never know unless you try it. And if you’ve given it a good try and it made no difference, then why make your life and that of your child’s miserable by continuing?

    Liked by 1 person

  2. I agree with you, actually. I would recommend (and DID when I was an ASA local chapter Prez) the GFCF diet but it doesn’t work for everyone. Folks need to know it’s okay if they try and it doesn’t work, they can move on and not beat themselves up about it. We feel guilty enough without letting others guilt us about our choices.

    I suppose we didn’t try the GFCF diet long enough, but at the time it was still new-ish and it was actually something we could try. The fact it is a disaster (and we have tried other treatments which were unmitigated disasters as well) for him and for us made me feel inadequate and horrible at the time. That being said, I don’t think it would have helped Kiddo. Coming across the tyraemine-free diet has saved his life…we often wonder if migraines were part of his behavior issues (we worked them out behaviorally but that takes time too) when he was young.

    Did I mention my Kiddo is 35 years old? Having someone tell me (or enlighten me, as she put it) about gluten when I have been advocating etc. for autism awareness for over 30 YEARS ticked me off BIG TIME!

    Liked by 2 people

  3. There is far too much guilt in the Autism community, we beat ourselves up enough, there’s no need for others to do it as well! And it’s not like you’ve discounted diet – you’ve worked out what suits your son and have helped him tremendously, what business is it of hers?? I would have been rather annoyed, too.

    Liked by 1 person

  4. Wow. How dare this woman challenge you on what is best for your kid! I guess I shouldn’t be surprised that the waitress would be so bold with you, but it still baffles me. I would have lost my stuff on her. I listen to a lot of suggestions all day, every day but to have someone really go all in on it and think they , would have been too much for me. I hope the only tip you left her was to mind her own business in the future. To argue with you over what is best for YOUR kid is too much.

    We focus on organics, limiting sugar, no caffeine, no chocolate, and no weird dyes and artificial flavor stuff etc and it works. My daughter doesn’t do dairy. I could eat a block of cheese in one sitting, but she has no interest in cheese, milk, yogurt etc. We limit gluten. She does well with this.

    I am just dumbfounded that someone who has zero experience with autism would dare to tell you what is best for your child. I admire your inner-strength to not knock her down off her high horse.

    Liked by 2 people

  5. I left no tip and am making sure everyone I know….and even those I don’t….hear about my experience. When there are no customers, perhaps the manager will be more open to my complaints. It’s a small, neighbor place which touts itself as being *family friendly* and I can only guess what that Gal would do with parents and young children…no cheeseburgers or ice cream or french fries because they aren’t *healthy*? We all eat healthy…and try to see our kids do too….but eating out is a treat for young kids and they should be able to order what they want! If you, as a parent, decide they shouldn’t have burgers or whatever, that should be your choice, not someone else’s. And what’s terrible about a peanut butter sandwich anyway?

    I have found, many people think because Kiddo is intellectually challenged, I must be too. It doesn’t bother me anymore because I open my mouth and start spouting multiple syllable words and then all is right with the world…but not with this person!

    Thanks for the support!

    Liked by 1 person

  6. Wow, some people really need to pre-think spouting off about what they think they know! I would be telling everyone who would hear about that eatery too! I have 2 with autism, one is better with zero milk products, the other it doesn’t’ effect. No child with autism is the same. What I have found works for one, at times is not the right solution for the other.

    I love the use of the word “civilian” if you don’t mind, I’d like to use it too. So often it’s difficult to explain, those types of people. Do you have a word for the “professionals” who are using dated (proved they don’t work) methods or are very much like civilians, except they are dealing with your child in a professional capacity? ( mostly I call them meatheads to myself)

    Liked by 1 person

    1. Sure use it….*Civilians* is a great term, isn’t it!?!?

      I would use “Dinosaurs” or “Living in the Stone Age” or “Jurassic Citizen” (or something like that, you get the idea) to describe those not keeping up AND working with your kid. And I’m going to tell you a secret……I’ve mentioned here (and a few other places) my Kiddo is 35 years old (he’ll be 36 the end of this month). I’ve been Around the Block a bit with autism treatments and *cures* and I have to tell you, there isn’t much new. Oh the names have been changed but essentially, the treatments or philosophies or educational strategies (PECs is different because with Smart Phone technology, you don’t need a flip chart of pictures anymore…YIPPEE!) are the same. I am in education as well as being an Autism Mom so I keep on top of things simply because there may be SOMETHING new to help my Kiddo. Those Folks Livin’ In the Past (another one!) try to palm things off as new or perhaps, this is what they studied in school and don’t know anything else.

      The bottom line is…if it works for your kid (or one of your kids), it doesn’t matter if it’s old or new, but it has to work. And if it doesn’t, you move on to try the next thing. And the secret is…for parents as well as educators…is to MOVE ON when it’s not working and not feel guilty about it. There are plenty of teachers who CAN’T move on because they don’t know what to try next. We as parents need to be one step ahead (I’m tired at this point….where’s the empty nest I was promised!?!?)…….and can point to the next thing. Sigh.

      Liked by 1 person

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