HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Aspergers Children and Picky Eating

"Our 8-year-old Aspergers boy (newly diagnosed) refuses to eat anything ...and I mean "anything" ...other than chicken tenders, mac n' cheese, and watermelon. On rare occasion, he might nibble on an apple (emphasis on "nibble"). We are at our wits end and so tired of arguing that we have simply given in to his limited food preferences just to avoid conflict. It's much easier that way. Any advice on this frustrating issue would be greatly appreciated!!!"

Because of their sensitivity to smell, temperature, taste and texture, kids with Aspergers and High-Functioning Autism are often "picky" eaters. Some develop fetishes such as only eating beige-colored foods or foods with creamy textures. They often like very sour or very spicy tastes. Some develop chewing fetishes and as a result, they constantly suck on pens, pencils or times of clothing.

These kids also sometimes have issues with developing gastric problems such as acid reflux, hiccups, diarrhea, vomiting, or constipation. They are susceptible to celiac disease, which is caused by poor absorption of certain nutrients. The danger is that celiac disease damages the digestive system. Aspergers kids frequently suffer from Dermatitis herpetiformis, which causes skin rashes and tissue damage in the intestine. It has also been shown that gluten can aggravate behavioral symptoms in those with Aspergers that are sensitive to these foods.

It becomes a challenge for moms & dads to make sure their Aspergers kid gets proper nutrition. One trick that works for many moms & dads is to change the texture of a despised food. If your youngster will not eat peas, try serving pea soup. If she refuses orange juice, try orange slices. Most clinicians believe that the less you indulge food fetishes, the less entrenched they become. If an Aspergers kid creates a rule that "no foods can touch on my plate," it can easily become a lifelong rule if moms & dads do not intervene.

One promising food therapy is the "Gluten-Free Casein-Free Diet" or GFCF diet. The theory behind it is that a youngster with Aspergers cannot digest casein (found in dairy) or gluten (found in grains). It is true that undigested molecules of these substances frequently show up in their urine samples. These amino acid chains (called peptides) affect neurological function and can worsen a youngster's symptoms. Peptides may have an opiate effect on some kids.

Moms & dads begin the diet by first eliminating either the casein or the gluten food group. No gluten means no bread, barley, rye, oats, pasta, all kinds of flour, food starch, biscuits, cereals, cakes, donuts, pie, pretzels, pizza, croutons, and even crumbs stuck in the toaster. You can substitute gluten-free products. Next, you eliminate all dairy products including milk, cheese, goat's milk and cheese, ice cream, yogurt, most margarines, puddings, and so forth. If you eliminate the dairy group, you may have to give your youngster calcium supplements. You also need to cut out "trigger foods" including chocolate, food colorings, caffeine, and peanut butter. The GFCF Diet website offers all kinds of resources for moms & dads such as cookbooks, food products, and DVDs.

Many moms & dads believe that the GFCF diet really helps their kids. In an unscientific survey of over 2000 moms & dads who tried it, most saw significant improvement and five reported "miracles."

Research into diet and vitamin therapy for kids with Aspergers is very sketchy at this point. Nevertheless, many moms & dads try them. One scientific study of alternative therapies found that over half of all moms & dads of kids with autism spectrum disorders have tried diets, herbs or vitamin therapy and 72% felt they were worthwhile. Many moms & dads swear by the GFCF diet, others prefer the Feingold diet or megavitamin therapy. You can buy supplements of herbs and vitamins specifically made for kids with Aspergers. Such supplements often include calcium, fish oil, omega -3 -6 or -9, vitamin B-6, HNI enzymes and DMG or dimethylglycine. If you use these diets and therapies, the best thing to do is to keep written records of how often your youngster tantrums or exhibits other behaviors. This way you can tell if the therapy is working.

There have been a few scientific studies of the GFCF diet. In one three-month study of fifteen kids ages two to 15 years old, there was no difference between the kids who followed the diet and those who did not. However, researchers at the Loma Linda Medical Institute in California concluded that the diet was mostly helpful and improved nonverbal cognition, but that more double blind studies are needed.

Many moms & dads have tried the GFCF or Feingold diets and found that they were not worth the effort. These diets make it extremely hard to buy regular grocery foods or to eat in restaurants. If there are other kids, you end up cooking different meals for them. Trying to keep to the diets causes parental burnout and that may not be worth their benefits.

Can a Gluten-Free Diet Really Help?

A gluten-free, casein free diet is recommended for Aspergers kids and grown-ups.

Often moms & dads feel rather overwhelmed with such a restrictive diet, and only opt to embrace it as a last resort. The results produced by the diet varies markedly - but the keyword here is RESULT. You can expect some result.

Kids with autistic spectrum disorders usually have gastrointestinal problems as well, such as reflux, constipation, diarrhea, vomiting and hiccups. It is know that the proteins found in wheat, rye, oats, barley and dairy products (gluten and casein) aren't completely broken down in kids with Autistic Spectrum Disorders. These undigested proteins can leak into the bloodstream, potentially interfering with neurological processes by having an opiate-like effect upon their systems.

It's suggested that these undigested proteins (peptides) can reach toxic levels, with the Asperger youngster seeming to "crave" milk and wheat products. Symptoms of gluten/casein intolerance include red cheeks and ears, dry skin, runny nose, headaches, hyperactivity, tantrums and malformed bowel movements. Does this sound familiar?

So what results can the diet produce? Moms & dads report a variety of outcomes, including - improved sleep patterns, improved speech and communication, improved focus or attention span, improved social skills, improved personal hygiene habits, improved fine motor skills, improved intestinal function, increase in affection shown, reduction of tantrums and irritability.

So a gluten-free, casein-free diet is definitely worth considering for your Asperger youngster. You don't have to feel overwhelmed by the restrictive nature of the diet. I suggest simply starting slowly and eliminating one group (either gluten or casein) at a time. Once you're comfortable without wheat or dairy products, then you can tackle the next element. If you see a desirable result from eliminating one component, you may decide not to go any further.

One mother of an Aspergers son who is a picky eater states:

"For our family simply substituting gluten-free flour in all recipes I used was a simple but highly effective action. I'm a home-baker, so in any cakes, biscuits, slices and desserts I just substituted gluten-free flour in my usual recipes. I didn't add any extras like Xantham gum, and didn't have any failures.

Finding an alternative to bread was our biggest obstacle. The gluten-free varieties just weren't the same, so instead we excluded bread altogether. The gluten-free pastas on the market are excellent, but do tend to cook slightly quicker.

I suggest you email all the major distributors of snack foods, such as muesli bars and fruit slices and ask for a list of their gluten-free products. This helps with easy identification at the store.

Eating out is difficult at first, but if you mention you're gluten-free most restaurant or cafe chefs will gladly prepare something gluten-free. (Of course, this rules out the fast food chains who aren't so obliging!)

For our family the diet finally eliminated all our son's known trigger foods such as peanut butter, chocolate and caffeine in sodas. We stayed on the diet strictly for 10 months before gradually reintroducing gluten. We have seen no return of the eliminated characteristics in our son . We have continued to use gluten-free pasta and flour in our cooking.

I believe that the gluten-free diet had a detoxifying effect not only on our son, but on all of us, and the benefits have been obvious. So be adventurous and try a gluten-free/casein-free diet for your Aspergers child ....you may be nicely surprised!"

The Aspergers Comprehensive Handbook 


COMMENTS:

Anonymous said...
This is so true, my son is 8 and will only eat with his hands and only processed foods n is a VERY fussy eater, he also still has a dummy, well 3 actually plus he has to have 3 rags which he cuddles constantly at home!

Anonymous said...
GOOD INFO. BUT I DEFINATELY THINK THE MORE PARENTS ROLL OVER WHEN A KID SAYS THEY DON'T LIKE SOMETHING, IT BECOMES A SLIPPERY SLOPE. AND AN UPHILL BATTLE WHEN YOU COME TO YOUR SENSES AND REALIZE THE KID IS IN CHARGE.

Anonymous said...
My 19 year old eats a specific Subway sandwich five days a week. At least he gets lettuce on it!

Anonymous said...
my sons were extremely picky before going gluten and dairy free. we did this due to food intolerances but it did work in our case. my boys now eat a better variety of food but still not as much of variety as i would like. we do alot of pureeing fruits and veges here!

Anonymous said...
I used to think the same thing, until I realized my daughter might actually starve herself because I was too hard-headed to comply with her simple requests. "Rolling over" isnt the preferred path but it keeps the kiddos content at least for a little bit. Thats what we're in it for anyways, isnt it?

Anonymous said...
my 7 year old son will only eat cereal for breakfast lunch and dinner and its starting to scare me. he will actually starve his self before he will eat anything else. he has always been tiny but his eating habits arnt helping. i have tried everything i can to get him to eat other things nothing works...i buy the gummy bear vitamins and he takes them fine thats all i can do

Anonymous said...
My son is still a picky eater, but has come a LONG way. He will eat foods from all food groups. He received ABA therapy and I remember how hard it was to get him to eat one pea (it took almost a week and two trained therapists!) To this day he still hates peas but will eat green beans like crazy! He has become more willing to try new things in the past year and that's a huge accomplishment for him. He announced last summer that he wanted to try grilled corn and brocolli and we were speechless! I hesitate to try the gluten free thing unless it is proven to be medically necessary for his condition, but I'm certainly not putting down anyone who has had success with it.

Anonymous said...
I put adam on school dinners its helped Adam he still as a thing he has to smell the food first diary products he hates have to get milk down in a milk shake

Anonymous said...
our 13 yr old aspergers son has just been diagnosed as coeliac(proven with a biopsy). He has always been sensitive to taste and texture of food usually only having one brand of the few foods he does eat. his fav foods are toast, biscuits and nuggets(all contain gluten) Does anyone have any suggestions in how we get him to at least try other foods or gluten free varieties? I know we have to get him off gluten but he has a meltdown over any new food.

Anonymous said...
My son craves carbs (breads, cereals) and sweets. We had to put him in OT when he was three because he wouldn't eat but maybe three things. He would literally gag and throw up at a pizza commercial or if I served certain foods for dinner. It is def a texture thing, but also anything the color of green he won't eat. It's very frustrating to have to make two different meals all the time (one for the family and one just for our son). OT helped with the food issue and he slowly began to increase the different types of food he would eat.

Anonymous said...
We tried the gluten-free route and did not see much of a difference, other than the outrageous cost to make gluten-free food. It was overwhelming to go grocery shopping and all that cooking only for our son to turn his nose up to the food anyway. We just try to make sure he is eating a healthy balance and encourage him to try new foods.

Anonymous said...
Really good to hear it from his point of view!

Anonymous said...
Great to listen from this perspective!! TY

Anonymous said...
Yep, this story is all too familiar to me. My son is quite a challenge to feed! And when we visit a friend or relative, I always have to advise: The best bet is to keep it plain and simple. Don't add alot of seasonings, don't smother it with any sort of sauce, don't mix foods together, don't cut such and such this way or that, I know what food battles to fight and which are completely futile. Some say if he gets hungry enough he'll eat it....but my son WILL hold out on you and you can watch him get ill doing so. He has always refused rice and all legumes except for CREAMY peanut butter. He won't eat crunchy nuts or salad or uncooked carrots. Forget pie or any other desert that has a mixture of flavors or textures. Yep, he's a plain vanilla man! I know just how to prepare what fruits, vegetables, and meats he will eat. I make sure he eats a nutritionally balanced diet on a daily basis, so at some special occasion where I'm not in charge of the food I just ease up and let him get whatever (at least there is usually some plain bread he will eat) so everybody can have a nice time. As a parent sometimes you just have to adapt and work with it just a tad. For example, my son is famous for not liking Mexican food. But I have discovered that he will eat plain chicken fajita meat ordered a la carte and some plain flour tortillas. So when we go to a Mexican restaurant that is always what he gets....and everybody is happy. The way I view it is that nobody is standing over me forcing me to eat something I can't stand, so, while I do try to encourage my son to branch out a bit, I know when to give him slack.

Anonymous said...
i don't even like my foods touching :) my son had portion rules- as he grew to 6 ft tall, he wasn't eating more to accommodate his growth spurt. it took many months to help him adjust to the proper caloric intake- he was skin and bones in the meantime.

Anonymous said...
my son has always been like this hes 14 now and getting a little better..but can totally relate

Anonymous said...
My son will only eat crunchy foods or foods that are pureed. I learned early on how to make smoothies with veggies. :) And yes I know all about him "holding out". He would rather starve and be sick then eat something with a weird texture. Sometimes at restaurants he just doesn't eat. I'm okay with that but some family members would rather give in and buy him a milkshake which is SO irritating. I turn my back for a second and he's holding an ice cream cone. Please, if you are reading this and you are a family member that under minds the mothers' wishes, PLEASE STOP you are not helping....done ranting now. :)

Anonymous said...
I love reading or hearing from other more verbal teens. My son has a hard time getting what is in his head out of his mouth - but he loves it when i find these little nuggets of asperger wisdom...It makes sense to me that he can only think of the taste of one food a time. I can't wait to ask him if that is what it is like for him, we are very sucessful at comimg up with plans once we know what his brain is saying and what his desires are saying. I might get a hug for this one! I am so thankful that everyone shares their experiences, so that other families can benefit.
4 hours ago • Like • 1 person

Anonymous said...
My son would go rather starve too than eat foods that are mushy.

Anonymous said...
My daughter is 5 and she would rather starve than eat just about anything. She won't even drink milk-shakes or smothies. Basically she survives on pediasure!


Anonymous said...
Yes that's basically all they eat....we quit fighting it...he is ten and only eats burritos,Mac cheese and nuggets and pizza and hot dogs sometimes if they look right.he was eating Lil pepperoni pizzas and picked Pepperoni's off so we bought same ones n cheese but he won't eat them because they look nasty...we can't give him chips with his food or he won't eat the burritos or main food...nothings changed just food...if we buy somethn n a different pkg he may never eat it again.his aunt gave him Mac and cheese n a blue box and he would never eat it again lol its very frustrating and challenging.we just gave up and give him vitamins...and if u try to make a good meal like say he likes green beans,,chic nuggets,Mac cheese and biscuits and I'm so happy cuz he loves those he can only eat one of them...so Dont knock yourself out trying I've done it for years just be happy he eats the one thing....good luck

Anonymous said...
Vitamins, and a good fish oil supplement.

Anonymous said...
My son is 8 and we dont treat him any different, but then again we never did. Both our boys eat what we eat. If they dont like it then they can go hungry. Yes he complains most of the time but he eats his diner. We keep our 8 year old on a very tight leash, he knows where the boundaries are what is not exceptionable behavior. Because he is so smart many times if we show him videos and let him research why its so important to say eat healthy he gets right on board and sometimes takes it to an extreme. My don LOVES burritos and would eat them all day every day. As a parent you cant coddle them just because they have a diagnoses. When he has a melt down I know its because its because of his "issues" but he MUST learn how to cope with this and learn to not let it cripple him. Its so hard as a parent and it breaks my heart to see him struggle but I also see how he is learning to cope and grow.

Anonymous said...
My very picky eater is now almost 10. For the last few years, I have had the few healthy foods that he eats on hand all the time. Finally, we went to a doctor who said that he has to cut out white carbs and sugar. He is old enough now to understand that healthy foods make an impact on his health and on how long he will live. Sometimes waiting it out really works well.

Anonymous said...
That's all they eat, plain cheese pizza, nuggets, chips, chicken strips, no fruit or veg, it's hard but the more you push and argue the more they back into a corner. It's the only control a child has is food intake. Coke and cordial too. I feel for you xx. He will come right later on but it's going to be a very long time. Also if it doesn't look right they won't even try it or not cooked by the right person. It's really tough but just no control at all. The hardest years are between 12 - 17

Anonymous said...
I am grateful that I introduced my son to healthy food very early in his life, I always felt that something was wrong with him because of his meltdowns and obsessions when I spoke to the pediatrician she suggested that he had asperger, and she was right, right now I am learning to cope with the tantrums and the never ending questions but I am glad that may son eats healthy with lots of vegetables even though he craves for oily food and from time to time i would let him eat pizza or chicken nuggets

Anonymous said...
My son is now 12 and started out eating like all others their fruits and veggies early in life...however very quickly started showing his dislike for food if it were to chunky or over or under cooked, or not the right temperature...or brand...he only eats about 5 things no matter how I try..Janes chicken nuggets, spaghetti with red sauce no meat, pancakes with raspberries, delissio thin crust cheese pizza, and if I'm lucky yogurt....vanilla....at one point I even had to heat his yogurt to get him to eat it.
I resort to vitamins !
This is a sensory issue and if anyone tells you it's behavioural they are 100% wrong!

Anonymous said...
i think intruducing healthy food very early makes a big difference but there many things that can be done. I recommend mixing the good with the bad steam veg and rice with chicken nuggets you have to try it wont be easy but not impossible. I do not recommend forcing the child it doent work with my son so i wont work with your child either

Anonymous said...
Yep! My 9 yr old basically eats carbs and that's it. We rely on Carnation breakfast milk and vitamins for nutrition at the moment.

Anonymous said...
My 13 yr daughter only eats a handful of 'healthy" foods so i just rotate these meals around. You would think it would be boring but she likes the predictability.
It wasnt worth the stress of the tantrums of force feeding when she was younger...... my mum.says i am too soft but at least meal times are quality family time over trauma time. Her blood tests for iron, vit D etc always come back good which surprises me.
I had to think smart, be crrative at times and accept reality to stay sane.....
The hardest thing is dealing with judgement from others..... but i know I am doing the best I am and she certainly isnt malnourished or starving...
Good to hear from others with the same issues and that I am not alone. ... and that its NOT my fault.....
X

Anonymous said...
Occupational therapy can help tremendously with decreasing oral sensitivities (when they won't eat certain foods because of how they feel) and expanding picky diets beyond chicken nuggets, mac and cheese, etc. It is costly if insurance doesn't cover it though. I agree that it is sensory (not behavioral) and the focus should be on desensitizing the child to texture, smell, and even sight of foods in order for them to attempt to expand their food choices.

Anonymous said...
Maybe try social stories about children trying a new food and liking it?

Anonymous said...
Don't under estimate milk and bread. I know it's not perfect but you are doing your best.....I know you are!!!! Xx

Anonymous said...
Mine is sixteen and it's chicken, cheeseburgers or pizza

Anonymous said...
As a wee one mine ate everything now my son is 14 and I'm totally jealous that your kids eat pizza and burgers. Mine wants to try pizza but it takes a long time to work up to it and if you open the box and he sees it. That's game over. I feel badly for our kids with the stresses they go through and the things they are missing out on.

Anonymous said...
Yes my 6 year old would never try pizza, or any 'meal'...just bread, milkshakes and some fruit.

Anonymous said...
My 9-year-old is super picky also. His diet was limited but he would eat a couple vegetables and fruits. About a year ago though he felt bad all the time and after a million tests, we found out he had very low iron and needed iron drops. These drops tasted so awful that he swore up and down he would eat better if he could stop taking them and he made an actual real effort to try new things. Now he will eat more of a variety and even though he doesn't love these foods I just remind him that it's that or the drops and it motivates him. His iron levels have been good every since. It's still a chore. Everything has to be so plain. No foods mixed together. No spice.

Anonymous said...
My 9 year olds diet is very limited. Dry bread, milk, beef burgers and cheese pizza. I got myself into a state thinking I needed him to try other foods and so many people saying ' he should eat what he is given or go hungry' and making me feel bad about his diet. When I saw his dr he had lost weight, the dr told me not too worry and feed him what he likes so he is getting the calories needed. I am so glad I listened, he is a much calmer child at mealtimes without being challenged, he put back on the weight he had lost. He has also started to ask to try new foods , he recently ate an apple ( I wanted to cry!!!) he also asked for me to blend 1/2 a banana in his milk, it wasn't a hit but he still tried something! My advice to anyone having a hard time or worrying is too ignore all the people giving their 'perfect parent' advice and just let your child eat what they like and come to you when they are ready for change x x x

Anonymous said...
My son has always been very picky too, and it got down to him only eating rice crackers. He lost a great deal of weight and as it turns out he has ulcerative colitis, diagnosed at 8 years. Once i sorted his flares and he takes probiotics and magnesium, his appetite is now much better. He's almost 14. I juice a combo of fruit and veg every morning now, and if it's got pineapple in it, and beetroot or purple carrot in it to make it pink, he enjoys drinking it.

Anonymous said...
I have heard a gluten free diet helps with Asperger's. Have u tried that?

Anonymous said...
I know from experience that this is frustrating! I have heard and tried it all from having them help shop, help cook, grow it! And so far nothing works... but, your son is eating and although it is repetitious, it is relatively well rounded. Protein, grain, dairy, fruit. One thing that has helped is sneaking veggie puree into the mac and cheese (cauliflower, carrots, etc...) but that had to be done with care as not to alter the flavor too much! I also slowly added whole grain pasta so that it
 

1 comment:

Mary Lutz-Brimmer said...

Because my 7 year old son is such a picky eater, and was underweight, his doctor recommended V8 Fusion. This way he can still be picky, but at the same time get his daily recommended amount of fruit and vegetables. I give him 8 oz in the morning with breakfast and 8 oz in the evening with dinner.
We have also had the my food can't touch issue in our house. It was to the point where there was typically multiple small plates (one for each food) on the table. On Monday my son said "Mom, I think it's time I have all of my food on one plate." I was floored! After the initial shock, we were doing a victory dance in celebration. Wohoo!

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

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Online Parent Coaching for Parents of Asperger's Children

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