How many with autism are on special diets?

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victorytea
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16 Aug 2012, 5:59 pm

Just got back from a family camping trip. Our 7 yo did not do well as he was very inappropriate trying to make friends, whinny and demanding and, basically made the trip not much fun. My wife and I decided it's time to research more about how to help Caleb (Aspergers) . The more research I do, the more people are talking about special diets. Realizing that this may be the only way some can make money from autism- I'm wondering- how many people with autism are on special diets and how many feel they help? I usually post on the parents forum but decided I would like feedback from people who have experience in being helped by diet. Do they work? Paul



Callista
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16 Aug 2012, 6:23 pm

It puzzles me why you would want to try a special diet--you don't mention any digestive problems or food intolerances. There's no reason why a special diet would help a child without those problems. Autism is a neurological condition--despite the many quacks trying to sell you supplements and diet books--and that means that the only possible treatment for it is to provide a good environment and teach the child the skills he will find useful.

If he does have digestive problems--sure. Eliminating a substance that bothers him would be a good idea, because autistic people are often unusually sensitive to sensory input, including that due to a stomach ache that comes from, for example, being lactose-intolerant. You wouldn't be directly affecting his autism, of course; but you would be giving him a healthier diet that he can digest effectively, and that is a bonus for any child. If you want to do that, sure--heck, get your whole family eating healthier; they'll benefit from it just like your boy will. There are a few people on WP who have food intolerances and allergies, whose autism is easier for them to handle when they avoid the substances that bother them. But--and this is critical!--they are not treating autism; they are improving their general health, so that they have more energy to deal with the daily stresses of living in a world that is not set up to welcome someone with an autistic sensory system and cognitive style.

When I was seven, I think my feelings about a camping trip might have been much like: "I'm not at home. I'm supposed to be at home. Everything has changed, and this is unfamiliar. I can't do the things I always do. I couldn't bring all of my books. I can't sleep in my own bed. This is getting worse and worse, and I'm getting more and more upset, so that smaller and smaller things start to bother me more and more. Eventually even the feeling of clothing on my skin and the sound of a parent's voice feel like hearing nails screeching across a chalkboard. Inevitably, I break down and start crying; and I don't stop until I'm exhausted, which makes it even worse because now I'm tired on top of everything else. Please, please, I just want to go home..."

An autistic child thrown into an unfamiliar situation can often be in a lot of distress that isn't obvious until a breakdown happens. That's not to say that unfamiliar situations should be avoided; what's important is that as he grows, the child learns how to prepare for and handle unfamiliar situations. If he knows what will happen ahead of time--has fair warning--it will be easier on him. Multiple new things at once should be avoided (for example, sleeping in a tent and being away from home: Sleeping in a tent in the backyard might be a good first step for a child who is overwhelmed by newness). The second camping trip will be a little easier; the tenth will feel almost natural, though he may be exhausted afterward and not have much energy (or be overtired, unable to focus and bouncing off the walls) for a few days following.

Have you looked into a concept called "social stories"? These are basically a way to teach a child about what will happen in an unfamiliar future event. They needn't be social events (the name is a carryover from when the technique was first used to teach simple social interactions). Have you ever seen those kids' storybooks, things like "My First Day of School" or "Daniel Goes to the Dentist" or similar? Social stories are a lot like that. They tell a child what to expect. Actual pictures of the event and the location can be especially helpful.

It's always useful to have a refuge when you are in an unfamiliar place, something that you can withdraw to when you are tired and you need to rest without having to process all the new things. You'll be taking your car on your next trip, and that's familiar to your son--maybe you could set up a little spot in the back seat for him to use when he wants to be alone and relax for a while. The car is familiar to him. Bringing favorite objects will also help. At his age, I had favorite books I took everywhere--there was one I remember about a caterpillar, which had holes punched in the pictures of all the things the caterpillar ate. If he has things like that, bring them so that he'll have a favorite activity for when he's stressed out.

One last caution about special diets: There have been quite a few reports of children who have been malnourished or had nutritional deficiencies because they were on restrictive diets. Bone density loss is associated with a milk-free diet, for example. Children growing up on vegan diets may not get enough protein (vegetarian is much easier to re-balance). Some diets eliminating major food groups can result in too much intake of one thing and not enough of another, and that can really cause health problems. Ironically, some of these children on restricted diets will actually become obese because their bodies need the nutrients that they don't get enough of, and so their brains keep their appetites turned up high... A special diet is a medical treatment like any other. If you are going to do something simple like not eating strawberries because you're allergic to them, that's simple; but huge changes like eliminating all wheat and milk (a popular "autism cure" diet) can cause serious health problems if you're not either willing to consult a nutritionist or become one yourself. It's hard enough to deal with autism as it is--you don't want to add the burden of nutritional deficiencies to the mix.


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Ganondox
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16 Aug 2012, 6:26 pm

I like eating food, gluten and dairy are delicious.


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Jtuk
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16 Aug 2012, 6:36 pm

Much of the benefit of experimenting with diets is for low functioning individuals. If he can't communicate and is in pain due to a food intolerance, then the child may have no other avenue to express this but through bad behaviours or self-injury. If these diets are a success they are not a cure, but might just reduce some bad behaviours.

A child with Asperger's can communicate any discomfort to you, so there is no need to experiment with diets.

Jason.



AnOldHFA
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16 Aug 2012, 7:10 pm

I can only speak for myself. I am high functioning autistic who was diagnosed at age 6.
I grew up in different places and lifestyles.

With my diet is only part. Lifestyle is as important..
I do not have any caffeine, little sugar (only in cooking) and avoid processed foods (junk food) and sugary foods (American food).

The lifestyle that made me happiest were we ate fresh local grown food and life was "harder". Ie. farm work, no electricity, cutting and carrying firewood and lots of long walks to places.

The lifestyles that I was unhappy in were the "typical American" lifestyles. Ie. sitting in cars for long periods, eating processed cheap foods and lazy (lifeless) living, where TV is considered part of life.

I am currently 49 and have made my life where I can bike or walk everywhere I need to go. I do not eat any fast food, rather as healthy as I can. Living like this helps "greatly" reducing depression, panic attacks, hyper activity and helps me sleep better.

I also loved living on military bases during peace time. That lifestyle taught me how to act respectfully and overall handle myself better.

Still I had "lots" of trouble growing up- I am autistic. I clearly know if my whole life had been "typical American" I would have been not as happy and much worse of a person all through life.

Most importantly - "Strict" Routine is needed at all times. Any changes, such as a camping trip, even as an adult, I have to prepare myself starting a couple of months before. Actively having to prepare and plan the trip or changes help me prepare much better.

My children most likely are not autistic, but they loved what I love as a child....