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!