I’ve written about this before – Emma’s limited diet. It’s self-imposed. As her parent and someone who struggled with an eating disorder for 22 years, I have been reluctant to get too involved in her food other than to make a few half-hearted attempts to offer her other foods I thought she might like. By the way, Nic, her older brother eats a wide range of foods, even eating a curried rice with cauliflower and chickpeas dish I made the other night, without complaint. (He was being a good sport, I know.)
When we first received Emma’s diagnosis I immediately put her on a gluten free/casein free diet as so many families found it helped their child. Some even found their child lost their diagnosis after going on it. We had her on the diet for more than three months and saw her lose 10% of her body weight with no other noticeable change. At the time we were working with a DAN (Defeat Autism Now) doctor, who specialized in allergies and nutrition. During that time she became even pickier about what she’d eat and by the time we took her off of the diet, she was eating soy yogurt and scrambled eggs, shunning “good” foods she once ate, such as vegetables, chicken or fish. Years later someone told me that soy is another food to be avoided and that may have been the reason we saw no change. All these years later, I still wonder whether we did the diet wrong, if we’d removed all soy products, perhaps we would have seen some significant change.
A friend of mine suggested the GAPS diet, created by Dr. Natasha Campbell-McBride who “fully recovered” her own child with her diet. The problem is, there isn’t a single thing allowed on this diet that Emma currently eats. In addition it is a labor intensive diet, requiring one to make homemade condiments – such as mayonnaise, ketchup, etc as well as yogurt. BUT – I am still willing to look into it and have purchased the book describing the diet as well as the cookbook with various recipes. (Richard is groaning as he reads this as he no doubt is remembering the fanaticism with which I tackled the GFCF diet.)
Before I even contemplate starting the GAPS diet, I will take her to a new pediatrician who is said to be versed in autism and am trying to encourage her to try some new foods. I intend to document our progress and (hopefully) hers on this blog.
Last night I introduced Emma to a piece of Comice pear, peeled.
She was tentative, but eventually after smelling it, licking it and touching it, she finally ate it!
This morning I gave her a small bite of a Fuji apple, which she immediately picked up and ate without hesitation. Tonight I will go out on a limb and try a raspberry.
Emma on her way to the school bus this morning.
If anyone reading this has had success with any sort of diet, please contact me with what you tried and any progress you saw in your child.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’sHopeBook.com
Both kids are on the gf/cf diet. Originally it was just cf free as I found it to daunting to go gluten free as well. I did this when Liam was first diagnosed at about 3 years old and Roslyn was 18 months ( as she never tolerated dairy) For Liam his concentration increased dramatically and his self harm reduced a lot as did his hand flapping. Seriously I used to set up lots ofactivities around our house for him to do as he could only focus a few minutes. The change was dramatic. Poor Roslyn always has chromic diarrhoea it seemd and I noticed it got worse the more bread she ate. So then I did gluten free as well and it stopped for the foirst time ever after having it ever since she was weaned. When they eat dairy (especially) or gluten they seem to get quite “high” . Very happy and giggly. Then Roslyn gets hyper and cries and screams and hits herself. Liam gets or hyper and starts shouting and being silly. He says he feels all shakey and cant keep still. He know knows he feels bad when eating those foods and so won’t eat them if someone offers them to him. Poor Roslyn craves food with dairy and will grab it if she can. It certainly hasn’t cured them but the side effects of eating gluten and dairy are very obvious in them. I have also noticed foods high in salicylates exacerbate Roslyns mood swings . Strnagely she craves raw brocolli but again she gets high then starts hurting herself. I have reduced the soy as I have heard it replicates female hormones andshould not be consumed in high doses The kids have been dairy free (except for slip ups) for 8 years and gluten and dairy free for 6 years and are not cured but it makes a difference. I have known others who have stuck strictly to the diet and it has made no difference whatsoever and some it helps. Liam loathes fruit and vegies and I have to disguesie them by blending the m and sipping them into foods or making fruit smoothies. Hew will eat banaba with icd cream or fruit in jelly but not by itelf. Except the odd slice of apple. He gags if he can’t stand the texture of the food.Roslyn loves different foods. I just keep trying every so often and sometimes I hit on another food Liam likes.
This is great! Thank you so much for writing everything down. So difficult to know what things to try and what to just skip as there is so much out there. I only know of one other person who sees a dramatic change in her daughters focus and energy when on the diet. Then I was told about GAPS and how a Dr. in Cambridge healed her child on the spectrum with it. But it makes the GFCF look like a picnic, at least for the first few months. I am going to keep trying to expand her food choices and then will see where that takes us. By the way, I didn’t see this until after I’d sent you all those questions so just ignore. But how long before you saw changes? Days, weeks, immediately?
Very quickly. Weeks. With the dairy though we reduced it gradually as I had read the child goes through withdrawl symptoms as it is meant to form an opiate in the body . So I mixed the soy and dairy first . Even made smoothies with the soy to make it palatable to adjust to the taste. Now though they drink organic rice milk not soy. Also I didn’t realize that some soy milks had gluten in them in the form of malto dextrose from wheat. So some of the soy milks gave Ros diarhoea. Unknowingly I tried different brands and the one without this was okay- I didn’t realize this till they tried gluten free as well and I undrstood the ingredients. Now I find I have to drink soy myself because of a medication I am on since having endometriosis and surgery for it. Now I have to adjust my diet!
But once it was dairy free- weeks. Even reducing it made a difference,. The same with the gluten- 2 weeks and Ros’s gut issues were normal. They can tolerate traces in the diet. So I am sceptical when people are told “oh you cant be doing it right”, if it doesn’t work for their child. I just dont think it works for every child with autism. Autism is many things I believe and different for every child. Donna Williams describes it as a “fruit salad” in one of her books. My two are very different to each other in how the autism presents and even its onset. I find the foods Ros CRAVES are the foods that affect her in some way if she eats a lot of them even with fruit and vegies. The brocolli, the grapes, olives too many oranges, tomatoes, even olives.
With Liam well he won’t eat them unless they are disguised! Yet he makes fruit smoothies with me and drinks them so he knows that is there. I am sure it is the texture.He used to eat a varied diet and then around age 5 he just stopped- at first Roslyn copied him and pushed her food away too. It was really hard getting her back on track. Liam is definitely overweight and I think it is the kind of food he eats not so much the quantity.
I think you are on the right track first trying to expand Emma’s diet.
I apologise for all my spelling errors in the last post. I am a terrible typist.
Thanks for sending this Liz. It’s so helpful to hear what other’s have tried, what’s worked, what hasn’t. I know all of our children are so different and what works for one child won’t necessarily translate to another, but it’s good to hear. By the way I love Donna Williams, such an inspiration, hers were some of the first memoirs I read so many years ago.