Autism Diet Help
The Specific Carbohydrate Diet (SCD) has helped my autistic son for over three years now. He is six and a half years old and is now free of his gastrointestinal problems.. and also many behavioral symptoms of autism which had bothered him –and those around him–prior to the diet.
Diet and its effect on autistic children has been in the news lately. But when I put my little boy on this diet just after his third birthday, diets were not very popular for these kids. And certainly not one as challenging as the SCD. (You can learn all about the Specific Carbohydrate Diet in Elaine Gottschall’s book, “Breaking the Vicious Cycle”.) The woman is my hero.
Basically, the diet is free of not only dairy and gluten, but it’s free of all grains. (In a gluten free diet, you may eat grains like potato, rice and corn, but not on the SCD). It is free of all sugars and sweeteners except for honey. There can be no artificial colors, dyes, flavors, preservatives, additives. Most fruits and vegetables are allowed as are most meats. Nuts and eggs are allowed if there is no allergy. Some people do a limited dairy version of this diet, though many autistic children do not tolerate that version–at least initially. These are just some highlights of the diet. Please see the “BTVC” book for complete details and recipes.
ANYONE CONSIDERING ANY DIET FOR THEIR CHILD SHOULD SPEAK TO THEIR CHILD’S DOCTOR BEFORE STARTING AND GET THE DOCTOR’S APPROVAL AND SUPERVISION. This blog is not meant to give medical advice and the moderator is not responsible for any injuries or damages claimed by anyone reading this blog. Your posting on this blog constitutes your understanding and acceptance of this disclaimer.
(Don’t you just hate that lawyer language?) But it is necessary these days…
Seriously, you need a doctor on board for this journey. Look for a DAN (Defeat Autism Now) doctor or a chiropractor who specializes in treating children with autism, as most pediatricians will not be supportive or knowledgeable about dietary interventions. Properly supervised vitamin supplementation is necessary.
At first, it seemed the only thing on the “acceptable food” list was freakin’ cardboard. But I took a leap of faith and committed to a 4 week trial. Change was noticeable within only days. And I really saw a dramatic change within the first 30 days. That is where the motivation to continue came from. That, and the realization that foods that may be digestible by other children are like poison to mine because his body converts them into dangerous and harmful compounds.
As a woman who has “fat” clothes and “thin” clothes that go back as far as the 80′s, I’ll be honest with you…diets suck. And the only thing worse than being on one yourself, is putting your child on one. Especially one that is so restrictive, so expensive, so time-consuming…and makes your child stand out from his peers in yet another way.
No, it’s not easy. But, God, is it rewarding.
So, in an effort to encourage dialogue and support for parents of children on the Specific Carbohydrate Diet, I offer this “Autism Diet Help” section of StimTalk.
If you have any questions or comments about healing your child through diet, please post them in the comments right here on this page and I’ll try to help you. So will others. (SCD moms are hard to find. We’re a tight-knit group of generous souls, because our diet is harder to implement … due to its restrictiveness… than the other more popular GFCF diet.)
Hi, I’ve just found your blog and it’s great. My son is 17 months and somewhere on the spectrum. We have a DAN! doctor and have been GFCF for almost 3 months. We’re on numerous supplements and about to implement the Methyl B-12 shots. My son does not have any words and BARELY any babble. I’m dying for him to say Momma! He had four words and lost them at about 13 months. He’s never really been the same since. Anyway, we’re going to start the SCD at the first of the year. I’m waiting because we’ll be travelling for the holidays…which should be a *joy* all by itself! I’d love to know where you find recipes and what type of lunches you make for your child. I’ve ordered the book BTVC and should get it next week. But, I’m really looking for more advice, support, etc. Thank you so much and keep posting! You can find me at http://kylerthetoddler.wordpress.com/
Take care!
Hi Kyler’s mom!
First, congratulations on being so far ahead of the game! You have an early diagnosis and have already started dietary interventions! I am very impressed and you should be very proud. Your son’s future will be brighter simply because you are taking early action.
I won’t pull any punches here. SCD is serious. It takes a major commitment on your part in terms of time spent planning and making everything your son eats. As you will see when you read the “Bible”, BTVC, the diet must be adhered to “fanatically”, in order for it to work. It takes the most dedicated person to implement this diet. You don’t give in on holidays and birthday parties. You find SCD legal substitutions instead. You view the illegal foods as poison because if your child can’t digest it, it harms him.
The earlier you start a diet like this, the better. You wil have fewer or no bad habits to break. Your son will not know what McDonalds tastes like, so his heart will not break. You will have less resistance initially, but as he ages, he will be curious about the foods of his peers in school.
It is hard at first, but it does get easier. Then it becomes second nature. Tell yourself you are going to try it for 30 days. Its easier to get through the first 30 days if you do that. If you tell yourself its forever, you may not make it through that first month at all. You will know by then whether it’s working. Having a child on the spectrum is always stressful, but try to implement this diet at a time when you can focus on it without many additional stresses or demand on your time. And if someone else is a caretaker for your child, insist on their compliance with the diet when he’s in their care.
It is so rewarding when you see the difference it makes in your child. And that is where you get your strength to go on.
There are recipes to get you started right in the book BTVC. I recommend following them initially until you are comfortable with the program. There are also many resources in that book for sources of recipes and bulk order nut flours. Read BTVC. Then read it again. My copy has fallen apart over the years. Go slowly through the parts that are scientific, as they are important, too. And ask your DAN doc to rule out any egg allergies so you know whether you need to use egg substitutes.
Since my son’s been on SCD for over 3 years, I have gotten comfortable adapting some of my own family recipes so that they comply with SCD. Maybe I’ll put out a cookbook of my own next year!
But I am getting ahead of you. Keep things simple for the start of the program. Everything you need is in BTVC for now…except the support and some reassurance, which you can get here. One of the earliest foods I gave my son on SCD was a homemade chicken soup. Its still his favorite. It has no grain (no noodles or rice), but he loves the chicken and veggies, and its so soothing.
I make chicken cutlets/nuggets using a ‘breadcrumb” of nut flour seasoned with sea salt, pepper, and parsley flakes. He likes grilled chicken or baked too. Hamburgers, no bun. Homemade bread with nut butters instead of grain. Turkey sandwiches. Fake fluff with peanut butter–his favorite lunch.
I highly recommend you keep a food journal too. And track behaviors in it too. That way you can see what foods he may be reacting negatively to…sometimes the reaction doesn’t show itself until the next day…or later.
Also, sometimes a food may be legal on SCD, but still not agree with your son. For instance, my son does not tolerate foods high in salicylates/phenols such as blueberries, strawberries, peppers, almonds, etc. Those are all legal on SCD (though not initially). It took me a long time to realize that too much of those foods made a big difference in behavior. Once eliminated…BINGO…big gains.
So I don’t want to overwhelm you and as you can see, I can talk forever about it. Read the book. Enjoy the holidays. Check in with any questions…anytime. That’s why I am here. Good luck.
Thank you SOOOO much for the info and advice! I will follow BTVC because I am determined to help my son. I don’t know if it is the answer but I’ll never know until I try. We did the food allergy test with his DAN! doctor and surprisingly, the only two foods to show any intolerance were soy and gluten. I’m suspicious though of a few others such as certain nuts, eggs, and corn. His cheeks turn red from something and I’m trying my hardest to figure it out!
So, your son reacts to almonds? How did you figure that out? I give Kyler almond milk about every other day. I’m trying to decide which nut is the least offensive for him.
Thanks again, I really appreciate it!
I’m smiling because you sound like me about three years ago! I love your determination to try this to see if it’ll help your son. I hope it does.
The way I figured out the almond thing with my son was after I’d had him on SCD for quite awhile. I felt like we were in a rut and I wanted to get more inventive with his foods, but stay SCD. I’d had the phenol/salicylate worry knocking around in the back of my mind for awhile, but didn’t want to acknowledge it because it’d mean taking away so much of what my son loved.
Then one day, I really looked into the list of the high P/S foods and it hit me. Some of the top offenders were things he ate daily. When I removed them all, I saw better behaviors. I took them all away for about a year before reintroducing any…and then only sparingly. They are reserved for special occasion treats mostly…and I give them with an enzyme designed specifically to help digest p/s foods. (Note: BTVC does not require enzymes because the foods are easily digestable by most people.) Some people use them, some don’t. Others, like me, only with p/s foods.
If I had to recommend a nut, I’d recommend pecan flour or, if no reaction to p/s, then almond. Or cashew. Hate to break it to you, but the almond milk you’re buying will have to go when you start SCD…I’ll let the book explain why.
You’re smart to watch for the red cheeks…they are a major red flag for an allergy of some sort (food or environmental). So are dark eye circles.
I am a mother of 3 andhalf year old autistic son. pls guide me for his diet. He simply loves milk and yougart. What should i do???/ i am so despressed and tensed.
I completely understand what you’re feeling and sympathize.
My little boy, who I refer to as “Fabio” here, has been on special diets since he first turned three. First it was 5 months of gluten-free, casein-free (GFCF), then I switched him over to the more restrictive Specific Carbohydrate Diet (SCD), which we have followed religiously ever since 8/05. But I will stress that it is not easy to do, and it is not inexpensive. However, I have learned that it is the only choice for my son.
He improved much more when we removed all grain from his diet with SCD (in GF, you can eat some grains like corn, potato and rice). Language came more freely, though still slowly.
He always had bowel issues, having never had a formed stool, and it took about a year and a half on SCD before his gut healed enough for his stools to be formed regularly…literally 10 days before his scheduled endoscopy/colonoscopy. For me, I put him on this diet primarily to heal his gut and if it helped with the autism, that’d be a bonus. Well, for him, it has done both.
I always caution people to have their child evaluated by a doctor before going on any diet, especially since nutritional and other supplements may be needed, and your child should be monitored. Most pediatricians are not that knowledgable about these diets. You should look for a practice that has DAN (Defeat Autism Now) doctor or chiropractor with knowledge of autistic kids and their diets. I also took my son to an allergist/immunologist/pediatrician before I began the diet and had him do labwork and other testing confirming that he had allergies/sensitivities to certain foods.
I believe that if a diet is right for a child, you will start to see some positive signs within a month of implementing it, provided you don’t cheat. It is not easy to make these changes, but it is far easier to do it when they are little. That way they will not remember eating any other way. The first two weeks were especially hard since my son (and many others) experienced symptoms similar to what drug addicts go through in withdrawl. If there are intestinal organisms dying off because you are depriving them off the foods they require to live, it isn’t pretty. But think of it as proof that you are on the right track. And it will pass.
I also believe that when a child “loves” one or 2 items noticeably more than other foods, and craves them to a level that seems excessive, it’s probably that item that will be the culprit. In your case, dairy/casein. In mine, it was bread. By the time I turned back from the fridge with the bologna, the slices of bread I’d had out had been snatched away and devoured!
Another sign that your child may have allergies, whether to a food, or something environmental, is what is called “allergic shiners”. They are black or purplish-red bags under the eyes. And the other sign would be rosy, red cheeks. Once I put my son on the diet, those things disappeared. But looking back on old photos, I see them. Wish I’d known…
So, putting your son on a diet is a great idea as long as you have a medical professional on board to insure that his nutritional needs are met through supplementation. I personally feel that there are no risks to these diets (other than having an allergic reaction to a permitted food like nuts or eggs) since it’s not drug therapy. It’s wholesome food, free of dyes and colors. Most of it is in such simple form so that it is easy to digest for even the most inflammed gut. Then as you heal, you advance to other foods.
While I believe the SCD is best for my son, it is the most restrictive and has fewer trained medical professionals to help you. That’s because, while its been widely used for IBS and Crohn’s and celiac for over 50 years, it’s only been linked to autism for less than 10..so it was really new to autism when we started it. If it is too overwhelming, please consider GF/CF as there may be enough benefits seen from that change in diet that…over time…you may then be motivated to move on the SCD. That’s what I did.
And come back and let me know what you’re doing! You will need support. You can do this!
This is hard, my son is autistic and been on gfcf diet for 5 years he is going to be 11 soon. We havebeen on scd for 5 days. Yesterday he had pink cheeks and he has always had dark circles under his eys. I want to cry. He is only eating about 6 foods because of his gag reflex on texture. If the pink cheeks meen an intolerance to a food, where do I start, what food to remove, I feel like I’m starving him. Help!
Jennifer, I’m sorry I was away when your comment came in. I hope things are a bit better. First, a big congrats on 5 years of gfcf. Diets are so hard to stick with. SCD does not come with much public support or understanding and its easy to feel isolated. You should have the book Breaking the Vicious Cycle by Elaine Gottschall as its the bible of SCD. I highly recommend the group pecanbread on yahoo as its moderated by women with years of experience in SCD implementation and is often flooded with questions from newbies, though sometimes some of the commentors can be annoying and judgmental. DOn’t worry about your son eating only 6 foods. Many young kids eat 6 foods, but they are often eating 6 questionable or bad foods like hot dogs, pizza, chicken nuggets and mac and cheese. If you get 6 good foods in him, its ok. I highly recommend the support and supervision of a knowledgable doctor, like a DAN (defeat autism now) doc or chiro/wellness doc, naturopath or nutritionist who believes in SCD. Your son may need supplements.
An allergist may be able to help you figure out if he’s allergic to a food (sometimes the red cheeks and circles come from environmental allergies). I found that at the start of scd after gfcf, we had removed most worrisome foods with scd, but I kept a food journal anyway and learned that some of the foods legal on scd were still not ok with my son. For example bananas, blueberries, strawberries and anything high in phenols and salicylates. I was devastated, feeling that its so unfair that such a limiting diet as scd was made harder by his inability to handle these otherwise scd-legal foods. You may want to google phenols and salicylates for foods that are high and avoid them, and see if that helps. Also remember, its hard for the body sometimes to adjust initially to scd, like an addict in withdrawl. If he is going to improve on scd, you will probably know in 30 days or less, so look at it a week at a time so its not overwhelming. My son eats tons of nuts flour products (not almond…high saliclyates) and eggs, which are two food groups famous for allergies. If your son can’t do eggs, you’d need an egg-free scd. If he can’t do nuts, scd is less doable as that knocks out every baked cake-like item and leaves you with fruits, veggies and meat only.
I know its not much consolation, but you are doing a great job even trying to do scd for him. Really. So few moms are willing to make such a sacrifice. Please try to stick out the 30 days. Its always hardest in the beginning. Let me know how you’re doing and do check out pecanbread, too. Good luck!