“Picky eater.” This is how Emma has described herself and gave me permission to quote. Food and eating in relationship to my daughter are topics I have (in the last year and a half) avoided on this blog for a variety of reasons, but the biggest being, because I spent twenty-two years of my life in the throes of an eating disorder documented ‘here‘ and ‘here‘ and so have very conflicted opinions about all of this. I have no problem discussing my own issues regarding food, but I don’t have that leeway when talking about my daughter’s relationship to food. It’s not my story to tell, it’s hers.
So this post will not be about her interactions with food as much as it will concentrate on my own as the parent of a “picky eater.” Despite my better instincts, I became way too involved in my daughter’s food, what she ate, what she didn’t. I made the mistake of believing there was a link between her inability to speak and what she was or wasn’t eating and that concern overrode my gut feeling that I needed to stay out of it… twice. As a result, this happened. The first time I “managed” her food intake was when she was just two years old, despite all the medical tests showing she had no intolerances or allergies to anything. The second time was far worse and more traumatic and it was because of those six weeks, when she stopped eating, lost a tremendous amount of weight, that I realized I had to stop trying to control what she did or didn’t eat. Please remember I am writing this from the perspective of someone who has huge personal issues with food. This is important.
I have heard from a number of people who have found from various tests done by their doctors or through their own experimentation that they feel better if they stay away from particular foods, others have been diagnosed as celiac or have specific food intolerances and allergies that when avoided has changed their lives significantly. This is true for all people and not just a specific neurology, though it may prove to be more prevalent in Autistic neurology, or it may be that Autistic neurology makes some experience the discomfort they feel more intensely. Either way, it is absolutely a fact that some people are allergic or have an intolerance to some foods.
When I first put my daughter on a gluten-free/ casein free diet I was filled with trepidation because of my history as both bulimic and anorexic. I worried about the unforeseen consequences of controlling her food choices, particularly as my eating disorder had nearly fatal consequences. When I gave birth to my daughter I was so relieved when she ate just about anything offered. As time went on and she began to narrow what she would and wouldn’t eat I became concerned, but wary of becoming too involved. I was hyper aware of offering healthy foods to my children, while not becoming overly controlling. So far so good. And then Emma was diagnosed with autism and in my research I read about the GF/CF diet. In the literature I read there were spectacular claims of “recovery” from autism and “losing their diagnosis.” This was in 2004. I was in the midst of my find-anything-that-will-cure-her- thinking. I don’t know if that diet is pushed on parents now the way it was then. But at the time it seemed many parents were implementing it, some with noticeable positive changes, but most were not, still, it seemed worth a try.
Like everything to do with autism, there are opinions, lots of opinions, but little real evidence that a diet was having the same massive effect on all children diagnosed with autism as it was on a few. So when the diet did nothing, and despite the battery of tests showing no intolerance of any kind, in a moment of desperation I implemented an even more draconian version of this diet in 2011 as advised by a naturopath I took her to. It was this final attempt that caused long-term and far-reaching damage. It eroded her trust and it caused her a great deal of unnecessary pain and trauma. It is this time period that Emma still refers to with great anxiety today. As someone who almost died because of my eating disorder it is tough to reconcile the fact that I have caused my daughter such suffering.
I bring all of this up because over the weekend, Emma said she was willing to “taste a carrot.” This was huge. HUGE, as Emma has not willingly eaten a vegetable of any kind since 2005. I have consoled myself over the years by reminding myself that there are populations throughout the world who subsist on an extremely limited diet. There are indigenous people in Northwestern Alaska who live on seal and walrus blubber and little else, but whose health is actually better than their southern neighbors. Various people over the years, particularly OT’s and speech therapists have tried to convince me to restrict Emma’s diet, but I won’t do it. Instead we discuss nutrition. We talk about food choices. I do my best to model good eating habits. We talk about vitamin supplements and I offer healthy choices.
When I asked Emma, “So what did you think about that carrot you just tried?” Emma wrote, “I think it’s sweeter than I expected. So not as bad as I had anticipated.”
“Do you think you will try it again?” I asked.
“Yes, I will taste it and thank you for your suggestion,” Emma ever so politely wrote.
Having lost more than 10 pounds – November, 2011
Emma's Hope Book 
Yes – the “diet cure” advice is still out there – I have heard about it – luckily my grandson has never been a picky eater – in fact – to my surprise – at age 3 he preferred corned beef and swiss on dark rye with spicy mustard to turkey, cheese and mayo, on white! And actually came over and said “more sammich” when he was done 🙂
Ha! Love his choice of sandwich. Sounds fabulous!!
I never tried the diet. I had it pushed on me by a number of therapists, parents, etc. And I do think for some kids there is an absolute connection, probably to do with allergies. But Risa is a good eater and why would I want to mess with that?
I am SO glad we never did, as we obviously know now that her Rett’s/Autism is genetic. Same goes for ABA. Two things I had seriously considered but an now happy I never went through with.
What we DO need to do is eat more healthy, as a whole family, which obviously includes Risa. But that girl is my biggest fan. She’ll eat anything I put in front of her, bless her heart! 😉
(((Ang)))
As always, thank you (and Emma) for your insights and experiences. As a practicing OT, this area continues to be tough for me. I have not had the experience of being a parent, let alone the experience of being a parent of a child who will not eat. So when a family wants and needs definitive “answers” or tangible “things” to try in terms of diet, it is hard for me not to feel like I am short changing them by responding with “well, I think it is complicated…” You always beautifully highlight your journey and mission to respect Emma as Emma and how you came to be able to do so. Thank you for your voices!
I don’t envy you, Meagan, particularly as I know, having been one of those parents looking for answers, that the last thing I wanted to hear was, “it’s complicated.” However I will say that the single best doctor we ever took Emma to, is a guy up in Boston, Dr. Timothy Buie, who was the first and only doctor who answered 99% of my questions with – “I don’t know the answer to that.”
I have never forgotten him. He was honest and I appreciate that more than I can describe.
My grown daughter has never been a picky eater – except for not liking french fries. (In fact, as a toddler she craved sweet potatoes/potassium, and to this day I think she still benefits from sweet potatoes.) But what she is adamant about is the amount of food/portions on her plate, and with no “seconds.” I think the food in itself is sensory-related re texture and taste (as positives), but I do think there are digestive issues, as she will somedays refuse to eat certain foods that other days she will eat. I listen to her, as she knows her body better than anyone.
Exactly. “…she knows her body better than anyone.” Exactly.
Wow! What might seem like the simplest thing for one, is a gigantic (wished for, though almost unthought) leap for another. My little boy has had severe sensory defensiveness including oral from day dot. If I could turn back the clock, and we can only hope to learn from our experiences and transfer to be
Oops! Tech error! Wow! What might seem like the simplest thing for one, is a gigantic (wished for, though almost unthought) leap for another. Warm congratulations!
My little boy has had severe sensory defensiveness including oral from day dot. If I could turn back time!!! All the early years of speech therapists and what felt like “forced feeding”. Being told to hold off on meals before appts in an already failing to thrive toddler, so he could be watched by a crowd of strangers as we tried to work out chewing and swallowing! Ai! After too many sessions of returning to the car both of us in tears and stressed for days,we embarked on a path closer to our own! And I can hardly believe the change. Still a modified diet to some degree, for volume sake. But I am so proud of my amazing eater… We chat about food and where it comes from. I eat it and he can chose to or not! He picks meals. When he started to trust he could say no he became so adventurous. I’ll never forget the day he swiped a pistachio from my hand and put it in his mouth, shell and all! I hadn’t even bothered to offer! Favourites at the moment whole meal crackers, crazy googs, pesto, org popcorn, ratatouille, mince filled with lentil and veg, teriyaki salmon with avo and steamed broccoli, roast sw potato and pumpkin salad, Carrot!!! Still working on harder veg and leafy green! But who can complain… 🙂
Your blog is keeping me going in the wee hours! Thank you all for your generosity in sharing x
Ester – how wonderful. I love this – “We chat about food and where it comes from. I eat it and he can chose to or not! He picks meals.” Perfect.
Thank you do much for this post, I believe the same as you we give her a healthy diet. We tried gfcf diet on my 6 year old non verbal granddaughter and it didn’t make any difference which supplements do you recommend.
Marie – I have no idea if any of these are really “great” but as these are the only ones she’ll tolerate, we get them. Em really likes two multi vitamins – one is in the form of gummy fruits made by Whole Foods and the other is from Nordic Naturals – Nordic Berries. She also, occasionally, takes a magnesium supplement.
Thank you Arianne for your reply, I will check these vitamins and see if they are available here in Gibraltar. I’ve also read that you need to take B6 with magnesium to get maximum results, what do you think? Thanks again.
What an emotional post. I hope you will find a way to forgive yourself — it is so difficult to admit that what you once believed was false and caused harm. You are a wonderful, loving, caring person who has made mistakes in her life, and I admire your courage and honesty in writing about this. You and Emma have come a long way in the last couple of years in terms of understanding and communicating, and this speaks much about the love and commitment you have. Love to you all. ❤
Thank you Alex. As you know, I am working with the forgiveness part. Doing what I can to funnel all those missteps into cautionary tales… who knows, perhaps others will be spared and that helps ease the regret. Love to you. I hope you’re feeling a little better.
Thank you (((Ariane))). I am gradually feeling better — it is so admirably typical of you to show such concern.
I didn’t have my “picky eating” respected as part of what I could handle due to sensory sensitivities until I was diagnosed as autistic at age 25, long after I was diagnosed with sensory processing disorder, even after about a decade of intensive and critical care treatment for anorexia where I had no problem eating the carbs and sweets the other women avoided and instead broke down in tears every time I was force fed a vegetable. Not to say I didn’t have an eating disorder – I definitely did – but if my parents, teachers, doctors, therapists, and even peers had made the effort to hear why I didn’t “like” vegetables (the texture of fiberous or grainy food induces an immediate gag reflex for me about 50-60% of the time), maybe they wouldn’t have been so desperate to inform me what food was good and what was bad. Maybe I would not have absorbed such rigid rules about what food was shameful (anything I could tolerate eating) and what food was acceptable (anything I couldn’t tolerate).
Yet even as I consider that maybe I wouldn’t have developed an eating disorder if I hadn’t been coached to control my eating as a way to be a good and acceptable person, I want to tell you that I don’t blame my parents or teachers or doctors or friends. I really don’t. They wanted the best for me, and they were putting in an incredible amount of effort to be me to be what they thought I needed to be. In my best interest, not theirs.
Once I was diagnosed with SPD, and later as autistic, many people started asking me about why I couldn’t eat certain things, and as a result I got the chance to practice communication about the topic, and that helped me find the answers myself. The people who won’t hear me when I try to communicate now, when they do not listen to my views about my body, those are the people I take issue with, and even blame a little.
When I read about your experiences openly communicating – beautifully communicating – with your children about food, perception, and so many other things, it really fills me with joy that they are going to be able to love themselves and know they are loved, and that they get to have these self-discoveries and self-expressions about twenty years earlier than I did. I have such hope and admiration for your family.
(Apologies that this turned into a very long comment. It is a subject that is very important to me, and also one that is still difficult to talk about, so it takes many words to feels that I am expressing myself well enough.)
Thank you so much for sharing this, every word of it! What you wrote – “the texture of fiberous or grainy food induces an immediate gag reflex for me about 50-60% of the time…” This is so important to consider and understand. Thank you, thank you.
Thank you for expressing this – it really is helpful to know. As parents, we struggle with being told what to do by “experts”, be it our own parents, doctors, school staff, etc. Honestly, I think we became a family of hermits in self-defense to all that unwanted input! It is important to have that “gut check” (pardon the pun) from others who have reached adulthood and have been through all these experiences that our kids may only now be having. Thank you again 🙂
I could have written every word of this, from the autism to the treatment for anorexia… once, at 17, I gagged at the table (in treatment) and ran to throw up… because they made me eat raw carrots! I’m 26 now and have a lot of health issues that affect what I can eat, but it took me until now to be able to stand by my convictions: my body, my choices. I can go into detail and explain why I choose to eat what I do, but I SHOULD NOT HAVE TO. Ever. My body.
Carrots are gross…unless they’re drenched in chicken gravy after being cooked for an hour and a half. Oh, and have I mentioned that they must be sliced very thin?
I’ve been known to eat one food for breakfast, another for lunch, and a third for dinner (the same three) for two weeks straight. Fluffernutters are one of them, as is fish. I am too sensitive to spice to eat most things, as a small amount of pepper can make me feel sick. But sometimes, I will purposely choose to enrich my shepherd’s piecwith black pepper. I call it a food stim.
Arianna – thank you so much for sharing this. It’s very helpful to read.
Unfortunately, those ideas that food restrictions will “fix” autism are still out there. I wish relatives, with their good intentions, would frankly just stop reading about autism. Period. Just spend time with the specific autistic family member and get to know that person — he or she is not in a book!
My MIL read some researcher about food and autism. It is being touted as a fix for autistic behavior. What behavior exactly? It is the inherent assumption that my child is a ball of misery and pain because of autism that is so very offensive. She doesn’t need fixing!
Yeah, when my daughter has a tummy ache, we take care of that; if a food bothers her, we don’t eat it or we try another brand of it (somethings that does make a difference) — but all of that is what we do for any child; it is not about her being autistic. Heck, we did the same for all her cousins who had a lot more intense food allergies. She is actually the least allergic and the least picker eater of the lot.
So I take the common sense approach and don’t restrict her food unless it is something serious. If she eats something and cries or gets upset because of a stomach ache, it is not the end of the world, it is not an autistic behavior, it is a tummy ache. And if she feels it more keenly, yeah, I’ll comfort her more and reassure her more. And then we will avoid that food in future.
Thank you, Ariane, for your thoughtful posts. You say it all so eloquently. Diets and food restrictions can lead to serious consequences as a young person grows. I am grateful that you are are such a reflective person and that you choose to share these experiences and thoughts with us. Thank you.
Thanks Dee.
“I wish relatives, with their good intentions, would frankly just stop reading about autism. Period. Just spend time with the specific autistic family member and get to know that person — he or she is not in a book!”
Love that!
As a mom of a child with Avoidant Restrictive Food Intake Disorder (Selective Eating Disorder), I so appreciate your insight and candor. Wishing you all the best!
Thank you Melinda. Wishing you all the best as well!
“… I spent twenty-two years of my life in the throes of an eating disorder … .. … and so have very conflicted opinions about all of this”.
Ariane, I am amazed and inspired by your ruthless honesty. Then I feel that what you are and do speaks to the thesis that everything which our collective initially views and understands in deficits terms, can be re-approached and reviewed to see it become the engine of a gift and a power.
“When I read about your experiences openly communicating – beautifully communicating – with your children about food, perception, and so many other things, it really fills me with joy that they are going to be able to love themselves and know they are loved, and that they get to have these self-discoveries and self-expressions about twenty years earlier than I did.”
Notesoncrazy, I love this. You’ve woven your threads of sense and thought so well into the cloth of what you say.
(((Colin))) Your comments are a gift. Thank you.
As always, a great and powerful post.
You know, it’s funny how eating disorders were not on our radar even when I was a teenager (unnamed) years ago – a girl on my track team was affected, and it never even occurred to me what was going on, though she’d pass out at the end of races and I’d be carrying her off the track. I’m so glad you’re able to talk about your experiences and destigmatize some parts of it.
As far as “picky” eaters go…it’s helpful that I was always the last one at the table, staring at piles of food that made me feel hopeless. Both my boys are extremely defensive about trying anything new. M actually does have food allergies that are life-threatening, though, so it was good that he flatly refused to put egg in his mouth as a baby. Another of his allergies is mango – though he’s never eaten it. he put his hands in a bowl of peeled fruit and was playing with it (unbeknownst to me!) and I came across him a few minutes later with his eyes swollen shut, and him pitifully uttering, “doctor, doctor!”
We never did try the gf/cf diet – feels like a cheat to admit, but my sister is a research biologist, and every time I’ve had a question about anything, I message her, she finds research papers, and sends them to me. So…I already knew that there were zero studies that even vaguely hinted at benefits, and one that demonstrated that children on the diet showed a deficit of a particular amino acid.
However, with his diet consisting mostly of cheerios, bananas, and gerber toddler dinners at the age of 7, I asked school staff to finally help us get a few more foods worked in. He may tell me later that he hated having to taste new stuff, but we’re to a point where he eats anything I make (though I make what I know he and his brother will eat).
He eats meat, as long as there is bbq sauce or ketchup involved – *loves* subway turkey sandwiches – loves carrots, cucumber, and even celery (we try to go green at home since the school lunches are carrots and apples…ahem) – adores pizza and spaghetti – and I’ve been able to finely grate up zucchini into the sauce without any unhappiness (think microplane).
When we go out, he looks over the menu and lets us know what he wants – though I will say to him at times, “dude, you’ve had pasta three meals in a row….”
Given all that, we still have moments when the meal is not optimal…and he’ll start to gag. We didn’t know how to deal with it at first, but by now we’ve just decided that it’s preferable to let him go spit it out and figure out an alternative. We have kept the rules the same for both boys – try a taste, if you can’t deal, then we move on. It’s *so* hard to let go of the old school, “you’ll sit there until it’s done” crap, but once I was able to exorcise that demon and let go of my own ego about being in charge, everything seems to have worked itself out…keeping “I’m not going to die on that hill” on replay in my head helps.
Oh – we also put up the weekly menu in writing, kids help pick meals, and I am not all that stingy with snacks…might be a pushover, actually, in that department…we’re not perfect!
“…it’s helpful that I was always the last one at the table, staring at piles of food that made me feel hopeless.” What a great way to describe the feeling!
Loved reading your comment. You’re funny, too. 🙂
Yep, the GFCF diet is still out there and it is a huge controversial issue in the world of autism. I don’t think it is being pushed as vehemently as it was in the past. Now it seems to be more of a “you might want to try…” thing. I have heard people refer to it as “complete quackery” and as “life changing”. For my son, his allergy tests came back positive for allergies to gluten and casein, among other things, so we eliminated those things from his diet. We would have done this if he was not autistic. I think for some unfortunate reason autism and GFCF got intertwined. For my kiddo, I think of it as: he is autistic and also has some GI issues. We are helping his sensory issues with OT. We are helping his communication challenges with speech therapy. And we are helping his intestinal issues with dietary changes. In no way am I thinking (or hoping) for a cure. Just to give him the best quality of life possible, and to offer him as many opportunities in life as I can.
Very sensible. I know of a number of people (Autistic and non autistic) who have allergic reactions or food intolerances and who have had their lives changed as a result of finding out and staying away from those foods.
Hi there – I’m about to post something on my blog (later this week) on this same topic, based on my experience with my son in the 90s. I’ll refer to your post when I do as your experience brings an extra dimension and it sounds like you persisted longer with Emma than I did with Dylan. I gave up quite quickly, but there was certainly a huge amount of pressure in the UK in the early 90s to try gluten and casein-free diets. Later, the discredited MMR vaccine research by Wakefield seemed to get enmeshed with this (through the link with bowel disorder) and there was some pulling back from dietary intervention. My post will touch lightly on this – it’s only a small part of a larger focus reflecting on early intervention. The story about the carrot is great. Dylan is 20 and has not yet eaten a vegetable 😦 I try never to say never about anything though!
hi Liz, oh lovely. I’ll see the piece if you link this one to it as I’m always notified when someone links up to this one. I look forward to reading!
Ariane, I would like to suggest container gardening. My kids ate everything they grew and more. Gardening is an all around education for everyone with great gifts at the end.
I am preparing tonight on how I am going to go “gluten-free” for a shopping trip to change the way and what I eat. I am having major health issues and weight gain is a major issue. The pounds are coming off slower than the past and I believe my vitamin D def and neuropathy will benefit from going GF. My daughter too is a “picky eater.” She wants to lose too, but textures is a major problem. To quote my daughter, “I want the chubby to leave.” Hopefully my example will help.
Both my kids are super picky, as was I as a child, but they are both even pickier. Since I knew what it was like to have someone try and force you to eat foods, I never tried with them but we do encourage them to try foods but never force. I believe my daughter’s sensory issues are part of why she is picky. Taste, smell, and texture all interplay and I believe foods just taste and smell differently to her than to us. I do hope she expands her food choices someday but she may not. Glad you and Emma are on the right path!
This was such an emotional, honest post – I know for sure it hit home for a lot of individuals out there. As someone who also struggled from an eating disorder, and who works with numerous autistic kids an families, I have a glimpse (though, not nearly as personal as a mother with her own child) into the struggle between helping and controlling and disordered and necessary. I don’t have anything brilliant at all to say except that, on a level, I get it. And your honesty is much appreciated ❤
Well, I think it’s something you had to try. Everyone is different, and thank goodness for that! With my daughter, she went from completely non-verbal (after 6+ months of speech therapy) to the first week on GFCF speaking 20 words, and she stopped flapping and came out of a fog. That was proof to me, but I understand it doesn’t work for everyone. It’s a fine line as a parent, you don’t want to do too much, or too little. Thanks for sharing this info.
I can SO relate to this… and the struggle to forgive yourself when you try to do something to help your child and the reverse happens.
Our 3 1/2 yr. old, nonverbal ASD daughter (Kaitey) eats what we now call the 3 C’s: chicken, cheese & chips… chicken is only 1 brand of nugget, cheese only 1 type of string, & 2-3 chip varieties + french fries… so frustrating as WE eat nothing like this! She’s just as picky with drinks… almond coconut milk & fruit punch ONLY. For my sanity, I give a liquid multi & fish oil… she is so so with taking it.
Like you, we tried gf/cf… we get bullied regularly from her school nutritionist to try it again. No way… but I doubt myself a lot… I get told we spoil her, we cave too easy, blah blah. But when she breaks down, so do I…. so now ( after some food and ABA mistakes) I no longer force her to do anything (except grooming… which she fights, argh)… and she seems happier for it!.
Your Emma reminds me SO much of my Kaitey… I only hope that my choices in raising my daughter will have as good an outcome as yours. 🙂
We’ve been at this longer than some of you – and yes, did the gluten-free, casein-free, sugar-free, yeast-free, corn-free, low-fat, White Diet, and Specific Carbohydrate Diet. Happily, some of them were helpful – in particular, the White or Low-Salicylates Diet and removing dairy (which, it turns out, is also high in salicylates). I discovered my daughter’s salicylate sensitivity when, of all things, I was trying to boost her vegetable/fruit intake; most of these are high in a salicylates and, it turned out caused her serious suffering and setbacks. You can’t rely on medical tests to detect food sensitivities but Elimination Diets are easy to do at home on your own. I’m so sorry to hear that Emma went through such a rough time when you were testing the diets 😦 !!! None of us want that for our kids!
I’m ever so low on spoons, so I didn’t read the comments. But… I was an extremely picky eater. Still am. But somewhere around age 15 or 16, I started actively trying new things. I still do. I have a rule for myself – I try it once. Just one bite. If I don’t like it, I don’t have to eat any more or it. I might try it again one day, but I basically just try and then move on. I think Emma is heading that direction, and I dare say that’s awesome. 🙂 I’ve discovered a number of really awesome foods that way, and definitely eat a lot healthier now as a young adult. Good on you, Emma, for trying a carrot. I’m glad you like it. Carrots are something I can’t even get near,..
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