I totally zoned out around chia chips or so. I have no mental bandwidth whatsoever left for discussions of other people’s special diets, and yet that is all some people want to talk about. I don’t mind hearing the occasional discussion about gluten-free baking. I don’t mind if people eat gluten-free. But there are some people who insist on driving the Gluten Free Train at full speed through every conversation, and frankly they must be stopped.
I mean, I don’t assume that every single one of my friends and acquaintances wants to hear every detail of my strategy for defeating Bioshock Infinite on 1999 mode, so why do they assume I want to hear all about their endless quest for gluten-free beers and breads and crackers and, even better, all of the intestinal distress that they suffer if they consume the dread gluten? Save it for people who actually seem interested. Those of us expressing fatigue on this issue have been subjected to just a few too many gatherings where people blah nonstop about how they brought GF whatever because they can’t eat anything anyone else brought.
As the mother of an autistic child, I think my opinion on this matter should be given special consideration.
I think the issue is this: Food is really tied up in social ritual. Everything involved in food–selecting, purchasing, preparing, consuming it is imbued with social significance–layers and layers of social significance that we all have an intuitive understanding of.
The problem with strict medical eating restrictions is that they skew the social rituals up. The make compromise, discussion, sharing, all those things. simply impossible. They can’t even be negotiated. This is off-putting. It’s confusing, because there’s nothing to replace all those social rituals, there’s no fallback. And then there’s this obligation not to mind, not to be upset, not to be emotional anything except sorry for them, because it isn’t their fault. But knowing your own emotions aren’t fair and therefore shouldn’t be expressed doesn’t make them go away, it just makes you more uncomfortable.
It’s kinda frustrating when someone can’t eat food you prepare, or can’t be told about some food experience you had, or always gets to be the one who decides where the group eats (or at least always holds the veto). And it not being their fault doesn’t mean your own frustration magically melts away. I mean, it’s not a baby’s fault that they cry, but that doesn’t make the crying not frustrating. But because the frustration is mixed with sympathy, most well meaning people conceal it and accept that that is part of life. And as long as it’s just a few people some of the time, it’s not that big of a deal, so it’s not that much frustration.
But when something becomes trendy, then suddenly lots of people are demanding this level of special treatment, this control over that most powerful of social mediators, and it becomes suspect. Because of the rapid rise, it’s pretty reasonable to think some of them are more interested in some social power play, on some level, than demonstrating a sincere medical need. But the rules of social interaction say you can’t argue with them, you can’t voice any suspicion, you have to simply cede control of all food-related issues to them. But what was a minor repressed frustration when it was limited to a few people some of the time become a major repressed frustration when it becomes quite a few people all of the time and almost every social ritual is twisted because of it. But still, it must be repressed because you can suspect that some people lack genuine medical need, but you can’t tell which ones, so everyone must be taken at their word.
So you get a great deal of repressed frustration with no real outlet. I can see why it causes so much eye rolling.
Thank you, Manda Jo. That was very well written and thoughtful. You’re absolutely right. I guess I get so caught up in trying to facilitate her fitting in with the social ritual of food (we don’t do much “replica” food at home, but at a pizza and cupcake party, she’ll bring her own versions of those foods) that I don’t generally consider the emotional impact on the party-giver. I’m generally so focused on the practical side of things and making it as easy as possible for them logistically, and minimizing her disappointment at not being able to share what they’re offering that I don’t much think about the disappointment from the sharer’s perspective. Thanks.
10 years ago, the diet du jour was Atkins, and with a few exceptions, THAT is not a life-or-death issue. Some people seem to think that the GF diet cures autism, and it doesn’t. It does seem to improve symptoms in some people, and if it works, why not?
I had an online friend whose son was diagnosed as a toddler with severe autism, and they decided to try a GF diet simply because they had nothing to lose. His social skills and overall health improved to the point where their doctors believe that the initial diagnosis was wrong, but they’re going with this simply because they know what works. Last I heard (the website closed), he was in mainstream classes in regular school, with some assistance, and doing quite well.
The much older half-brother of my autistic relative tried going GF for unrelated reasons, and found out that he’s not celiac, but has some allergies and other intolerances, so he follows this diet for this reason. I also have a friend whose chronic sinus infections disappeared when he was discovered to be allergic to wheat. He doesn’t have an issue with gluten - it’s just wheat - but following a gluten-free diet means NO WHEAT.
p.s. Someone on yet another website decided to try the GFCF (casein free) diet, and while her child’s autism didn’t change, her husband’s psoriasis, which defied all standard treatments, cleared up just on a gluten-REDUCED diet. His dermatologist was impressed enough to recommend this for other people with the same problem. One of their therapists said she saw a dramatic improvement in her arthritis when she cut out dairy. Again, hey, if it works, why not?
Obviously, if it works, then great. But the problem with this sort of anecdotal science is that you don’t know if it works. You have correlation, but not causation. What you see might be because of the diet, or it might be because of any one of a thousand other things, or some combination of them, or just for no reason at all. That’s what scientific studies attempt to address. Human brains are very very very good at establishing connections - often they’re too good. We instinctively see connections, whether they’re justified or not. This made sense on the African savannah - if we were to get sick and from then on avoid whatever we ate that day, that’s more likely to be a help than a hindrance - but when it comes to modern medicine, we need to be very, very careful to make sure that the connections on which we base our decisions are objectively real.
BTW, I have a Facebook friend who was discovered a while back to have celiac sprue, and when she went gluten-free, her fibromyalgia symptoms improved dramatically. It hasn’t completely gone away, but it’s definitely improved her quality of life.
I wonder how many of the “frail sickly children” of the past actually had food allergies or intolerances we didn’t know about. This is actually how celiac disease was discovered; it was thought to be a disturbance of fat digestion until WW II, when the Netherlands’ supply of wheat, barley, and rye were cut off under Nazi occupation! Everyone else was starving, and these kids suddenly became healthier.
Well, I’m a goddess for sure, but not because I have a son with autism. That’s got zero to do with my awesomeness, or anything else really. Do you know what having a son with autism means? It means I have a son with autism. Nothing more. I might understand a little more about parenting a special needs child into young adulthood than a parent without a special needs child might, but so what. Parents with girl children know more about that than I do, since I only have boys. What of it?
My mom is also a goddess, but not because of her breast cancer and mastectomy. She always chose to deal with her illness with her usual twisted humor.
Me: Hey Mama, What are you up to today?
Mama: Nothing much. Had a go round with the phone company today. I played the cancer card and they fixed the problem.
I think it can still be useful as a quick note to the doctors that something might be wrong. OTOH, at my wife’s hospital nurses would sometimes, with relief, add FLP–funny looking parents–after meeting the outliers on the “Are they human?” spectrum who brought a FLK into the world.
Yeah, yeah. Take it to Jenny McCarthy’s website, sister. You read the OP.
That whole post was lovely and can be seen as a metaphor for the Facebook Fatigue (love that term!) so many people are feeling about autism and breast cancer. Yes, those affect certain people deeply, but everybody has their own problems and it’s exhausting enough to survive with ours without pressure from society to treat certain groups special. Plus you got to say it about people everybody else already hates!
My own daughter had her first epileptic seizure in second grade. Daily or near-daily seizures followed for years, with SpEd aides in classes and a HS diploma that some people would dismiss as a “participation ribbon” from an education system gone all PC. Now, sixteen years later, she’s down to “only” one or two seizures a month and she has a water-filled, Brazil-nut-sized hole in her left temporal region. She gets by pretty well for being brain damaged and is philosophical enough to not ask, “Where’s my parade?” but she’s a better person than I am.
THAT’S how you do it! You save it for special occasions (talking to a stranger from the phone company is a special occasion) and it never gets worn out.
I think this hits the nail right on the head. A big subsector of our society seems to equate worth with suffering, specially dramatic suffering and the more glurge the better. Look at all those episodes of American Idol where the contestant’s voice becomes completely secondary to whether he has a good backstory about how his dead grandmother’s wheelchair got cancer. And because there’s a lot of discussion about both breast cancer and autism in general, people who’ve experienced them are more likely to be sharing their stories, so they’re more likely to attract the suffering-bingers.
It’s not autism/breast cancer worship: it’s suffering-worship.
I think it’s less about suffering, and more overcoming. We don’t actually want to read about people laying in agony and misery, crying out for more morphine and begging to die. What we do want to hear is the story of person who used to do this but who is now running marathons.
Which I suppose is a natural and good thing. Everyone wants to be inspired. Those kinds of stories are inspiring.
But it sucks for the people who are laying in agony and misery, crying out for more morphine and begging to die. Crying about the suckiness of reality doesn’t belong in the Hallmarkian feel-good narrative. Nor does a serious discussion about hospice or palative care. If you want people to be in your corner, you’re gonna have to Be Strong. Which means wearing a smile, always having a positive outlook, and not bumming people out with your fear and sadness.
The generic public also doesn’t want to hear any depressing stories about autism. They only want to hear about quirky savants or little kids saying “I Love You” after years of silence or the sweet kid who makes the basket at the end of the big game. Feel-good stuff, not smeared-feces-on-the-wall stuff. Which, I imagine, makes it hard for parents of kids with autism to talk openly about what they are dealing with. And it also makes it hard for people with autism to talk about what THEY are dealing with. If you ain’t got a cute overcoming story fit for a made-for-TV movie, people really don’t want to hear about it.
I don’t blame people for not wanting to hear the truth about suffering. We’re all experts in some kind of suffering, and we need instructions on how to cope with it, not more lessons on how bad it is. But sometimes I think we’re addicted to hope and happy endings. Everything eventually works out somehow. But more often than not, that just means the worse case scenario wasn’t as bad as everyone thought it would be.
OK, I’m late to this party. What about the demonization of patients with lung cancer? A dear family friend died from lung cancer (she was a non-smoker, btw, but therein lies the issue) I told members of my extended family about her and they were all condemnation and hellfire because hey, she musta done it to herself right? She was a non-smoker, I emphasized. Well, it musta come from somewheres!
Such ignorance just compounds grief, at least to me it does.
But the lack of sympathy for lung cancer is still out there.
Same thing with cirrhosis of the liver. There are types of cirrhosis that you don’t get from drinking, and it can also be caused by environmental toxins other than alcohol.
I think, as far as parents of autistic children being lauded as saints, it is a little ableist. The idea that, “Oh, my GOD, how HORRIBLE, how TRYING, how mind-numbingly AWFUL it must be to deal with an autistic person every single day! I’m just in AWE of your FORTITUDE in the face of such TRAGEDY!” is kinda shitty, to me. Yes, I know it’s hard, frustrating, definitely more challenging than for the average parent. But I think it implies that having an autistic child is one of the worst things that can possibly happen to you, which just… isn’t true (I don’t have any children, autistic or otherwise, but I know some parents with autistic children, so that is my observation.) What are we saying about autistic people when we can’t stop talking about how especially hard it is to deal with them? For instance, I don’t hear the same type of rhetoric about parents of deaf/blind children. I read some criticism of Autism Speaks the other day that made this point- I don’t know a ton about it, but apparently many autistic people/parents are offended that the organization seems to approach it as, “We need to eradicate autism now!!! Because parents are suffering!!!” instead of, “How can we make life easier for autistic people and those who live or work with them?”
I wish there was a way to “eradicate autism” - and not because parents (I am one) are “suffering”. It’s because autistic children are suffering. It is very clear to me, as a parent, that my kid hates his autism and is suffering because of it.
I know he wants friends and he doesn’t have any. I know he wants to be invited to birthday parties and he isn’t. I know he wants to hang out with kids at school and he can’t because he can’t really talk to them. I know he wants to express himself better both to me and to kids his age and he can’t. I know that having the autism “quirks” bothers him, sometimes to the point of tears, and he can’t do much about it. He is suffering, it hurts to see it, and I hate it when people claim that being autistic is just fine. No, it isn’t. But it is something that you have to live with, there is no cure, and no one even knows why/how autism works.
That’s the thing there is a huge spectrum of experience in breast cancer, anything from double mastectomy with multiple bouts of chemotherapy to minor surgery and out patient radiation, with the vast majority of the “cancer survivors” falling in the latter category. The thing is whether the person falls in the high or low end of this spectrum, or falls among the third category of breast cancer non-survivors, has nothing at all to do with how courageous that woman is, but really just depends on the luck of the draw.
Although by this measure, relative to other cancers, breast cancer gets a tanker truck of oleo. Particularly as compared to Lung cancer, probably because …
I think currently about 1/5 lung cancer deaths is a non-smoker. And as the trend towards less smoking continues this percentage is only going to rise.
I have a relative who will never live independently. I guess the “nothing wrong with being autistic” thing comes from the angle of “It’s not a disgrace to be that way, and the parents didn’t cause it”, I guess.
