I know a few families who are doing this. I dunno if that is what really helps. Like most parents I know trying to find that "silver bullet", try A, B, C, and D all together and find stumble on E and add that to the treatment regimen. Then find out that C is bad and remove that cold turkey. Maybe find B is not effective but won't hurt, so continue that. Then find out A works better with F, so they find the time to schedule F. All the while parents are now doing A, B, D, E, F discontinued D. They run themselves ragged as parents doing all this and IMO, too tired and burnt out to parent.
I was also cruising by the autism speaks forum yesterday…to see what side they stand with autism. I was a bit disappointed but I can’t blame the parents there, because all too often parents follow the mainstream and hope to find something to “cure” their child rather than accept them for the person they are.
Some of the parents there still think autism is caused by bad parenting!
Yesterday I was also browsing you-tube watching a few home videos people made of their autistic children.
One of the videos seemed to thin that a special diet (and something dealing with tomatoes??) helped improve their PDD NOS son become verbal and willing to travel, etc...
I'm not ready to attack the idea, but I'm not sure if it really is the diet that is helping.
I've never tried any special diets and I became verbal, and if my family was into traveling, I'd likely enjoy it as well. I'm relatively social, although don't care much for group discussions. I prefer to pick one on one conversations.
I don't mean to bust any bubbles, but I think the autistic child in the you-tube movie would likely improve regardless of diet. I think what is most helpful is a supportive parent that is willing to embrace the child for who they are and help make some of the struggles a bit more manageable. Not to mention supporting their strengths and advocating.
That's where IEP's social stories, early intervention, etc come into places. Although to be honest I have a hard time with the social stories because I seldom find the real life stories to match exactly with the text.
I would be very cautious in putting your child on such a diet. The National Institute on Medicine published a study recently linking thin bones to boys with autism. It discussed the danger in putting a boy with autism on the diet because of the removal of casin (dairy) in the diet. I have been working with children with autism for over 10 years and have NEVER seen any difference in the child before and after they have been on the GF-CF diet. If you do decide to put your child on the diet, I would take some sort of data on behavior under the supervision of a Behavior Analyst. First to get a baseline on how frequently any problem behaviors occurs and then after the implementation of the diet to see if there are any changes.
Thanks Angela I will take the Behaviour Analyst information into account and am meeting with one next week. Reilly started his dairy free diet today - but given the information you have given me, I am now cautious with the long term affects and would love to know which study you are referring to so that I may read it as well. Do you think you could find out for me please? Thank you kindly for your input I am verry appreciative of your feedback.
I have a 7 year old boy with autism.
My approach has been to try and identify what his biggest problems are and what non-invasive treatments I can try.
For example. My son has sensory differences so I have had his tested for Irlen Syndrome. He now wears Irlen lenses that help with visual distortions. I am also waiting for Occupational Therapy for help with sensory diet. My son has access to headphones both at home and school. He is able to choose when he needs to wear them. I think the glasses and headphones reduce the amount of incoming stimuli to his senses and allow him to 'last longer' before he needs peace and quiet.
I am now thinking about learning some Makaton to help to reinforce some words and for him to learn how to sign at times of stress/anxiety when he is unable to speak.
There are alot of special schools in the UK that use the GF/CF diet because they notice differences. They tend to focus on behaviour differences and improvements on the diet.
Do you/your family have a history of food intolerances/allergies etc.
I myself am on GF/CF, sugar free, through a nutricianist because I have a diagnosis of Fibromyalgia. This has helped me no-end. I no longer have a constant headache, I no longer feel drugged. I am not tired all the time. The pain in my muscles is slowly subsiding. So I am now trying GF/CF with my son. It is too early for me to say definately yes or no to its success. I think it takes a very long time for gluten to get out of the system. I think he has better concentration and is beginning to chat more (but he may have had those improvements anyway). I try to stick with it as far as possible. But if he goes to a party I let him eat with the other kids. You can't beat yourself up about everything all the time. Life is too short for that! I find I can eat forbidden foods for one meal without any real effect. But if I do it continually it is as though whatever is in the food that causes me the problem just builds and builds up until symptoms begin again.
If you are using a nutricianist they can advise on the diet from a health point of view. I found it quite easy to change my sons diet even though he is sensitive to smell and taste. GF food is similar and sometimes better that the normal stuff. Soya milk is an acquired taste, but some brands taste quite nice and to begin with I mixed it with strawberry milkshake mix to cover the change in taste.
I would say have a good go for at least 6 months to see if there is a gradual improvement and then you could try re-introducing dairy and see if there is any change or relapse.
I did change over the food gradually because some parents told me their children went through a kind of withdrawal when they stopped certain foods immediately. Prior to the diet my son was always asking for cheese sandwiches and milk. He eats a much more varied diet now.
So I think it is worth a go, then weigh up the change you see against how hard it is for you/your son to stick to the diet.
Before changing any child's diet, you really need to consult their pediatrician. This diet thing would probably work for kids who have allergies to wheat and milk. So, get your child allergy tested. I have read that this diet works for some autistic kids, but they have allergies to this stuff. If your child doesn't have allergies to this stuff, you are removing important nutrition from his diet!!! That's what our pediatrician told us. I tried this diet for a month with my daughter and noticed no results. Someone else told me their son changed within a week of being on this diet, but when he was allergy tested, he had allergies to it. So, seriously, get your child allergy tested before removing foods from their diet.
Wheat is a good source or whole grains. Removing this from a child's diet removes their intake of fiber, generally. Milk is a good source of protein. And many times autistic children also have food aversions, whether due to taste or texture, so that limits their diet already. Anyways, that said, if there is a food allergy to this stuff, you should remove it. Only way to know is to get your child an allergy test to it. I try to stick to organic food as much as I can with my daughter. And although we don't go gluten free, I am diabetic, so our house usually eats stuff that is not high in gluten already. Stuff like sprouted grain breads are not made out of flour, but made out of whole wheat, but not whole wheat flour. The gluten level of sprouted grain breads is really really low. Spelt flour is also very low gluten. Rice doesn't have gluten in it either. Though it does have a lot of carbs. Carbs are good for kids though, unless they're diabetic. I try to do low gluten because I have lupus (an autoimmune disease). I noticed that going gluten free does not help me... but I've noticed that it's the processed stuff like the breads that get me. That's why I do the sprouted grain bread or bread made with spelt flour. You can also home make a lot of stuff, too, in a bread machine or just using your oven. I do have a slight wheat allergy. My daughter does not. So, hence I notice changes in me with the diet, but not changes with her since she doesnt' have the allergy.
Anyways, whatever you decide to do, just make sure your child gets a healthy balance of food from all the food groups and supplement with a vitamin if you can. My daughter loves those Flintstones toddler chewables. Yeah, they probably don't absorb as much as the organic whole food vitamin stuff, but she likes the Flintstones and will have one every day. :) But, she does manage to eat fruits and although she doesnt' like vegetables besides sweet potatoes and corn, I mix baby food into some of her other food so she's getting greenbeans and that sort of stuff without her knowing. :)