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Our Journey with Autism

I’ve had quite a few people asking me about autism, ADHD and diet recently so I thought a blog post would be appropriate.
This is one of the main reasons I’m as obsessed with nutrition as I am.  I’ve seen first hand the drastic effect diet can have on behavior.  (This is the only digital picture I could find near the time of his diagnosis).
image from i155.photobucket.com

Almost 8 years ago, our oldest son (referred to as A#1 in all my posts), was diagnosed with autism shortly before he turned 3.  We were noticing signs from the time he was a small baby but being first time parents, we didn’t realize they were signs.  The first sign was lack of eye contact.  We just thought it was funny how he would do everything in his power to not look at us when we were holding him.  My mom said we should mention it to the doctor but I didn’t see why.  I had no idea that lack of eye contact was a sign for anything.  He was slow to talk, but I’m not a big talker myself so I just thought I didn’t talk to him enough.  By the time he was 2 with only a couple words and lots of jibberish, we were getting concerned.  I was especially concerned because he seemed to not understand us at all either.  I knew babies comprehension was usually larger than their expressive language.  My mom again told us we should mention it to the doctor, but I still didn’t didn’t believe something was wrong.
And the obsessions!  When people would tell me their child was obsessed with something like cars, I would laugh and say they had no idea what obsession was.  My child was obsessed.  Fans, wheels, washing machines (basically anything that spun), electrical outlets and phones.  Oy the phones!  We actually had to lock our phone in a kitchen cabinet out of his reach to keep him from calling people at age 2.  We had “time and temp” programmed into the phone so he could “talk” to someone when no one else was available.

The breaking point was a conversation my sister had with my uncle’s sister, a special ed teacher who worked mostly with autistic children.  We had been to a birthday party at my aunt and uncle’s house where Barb was able to interact with A#1.  She spotted the signs right away.  God bless her for saying something to my sister.  My sister very gently let me know what Barb had said so I finally had the kick in the butt to make some phone calls.  I had no idea that autism had many different faces, not just the face of Dustin Hoffman in Rain Man.

So now we’ll jump forward a few months after confirming with a child clinical psychologist and early childhood experts with the school, high functioning autism.  Here I need to thank my mom and Uncle Munch for instilling basic nutrition facts in me from the start.  My mom used the Feingold diet with us kids when we were small so I was well aware of the fact that diet can affect behavior.  The first thing I did with Alex was start researching diet and autism.  I was already aware of the gluten/casein connection but knew there had to be more.

I stumbled upon the SCD (specific carbohydrate diet) and it seemed to be the answer.  I purchased the book, “Breaking the Vicious Cycle” and immediately changed his diet.  Basically you remove anything that takes effort for you body to digest.  Protein and monosaccharides are what you can eat.  Meat, nuts, properly cultured dairy only, cooked fruits and veggies, that’s it.  No grains, no startches.  The key to a diet like this is to focus on what you can have and not what you can’t.  While it may seem restrictive, it’s incredibly healthy.  To make it easier on Alex, the whole family ate this way for the most part (we’d sneak forbidden foods when he was sleeping).  For 2 years he ate this way.  We noticed within months of starting the diet, his vocabulary increased exponentially.  His activity level was more on the level of other boys his age, he could handle change better and better, hand flapping disappeared, obsessions… well, that’s about the only thing we still deal with.  He’s spinning my salad spinner right now as I’m writting this.  But salad spinners are pretty cool…

We were on the strict SCD for 2 years and slowly worked over to a modified gluten free/casein free diet.  Sugar is very strictly limited, no soy and limited grains as well.  He seems to do totally fine on unpasteurized cow milk (it’s interesting that we tolerate unpasteurized but not pasteurized).  We also follow the Weston Price Foundation guidelines of eating real foods: Meats, eggs and milk fed on pasture; cod liver oil and sunlight; lots of fresh veggies; bone broths; lacto-fermented foods, yogurt and all sorts of probiotics.  We’ve gotten to the point where if he gets wheat on accident, he’s fine but I still won’t add it back into our diet as a regular guest.  Maybe at some point I’ll be ready to try soaked/sprouted wheat or true sourdough bread, but I’m still scared of gluten.
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Recently I came across and new diet called GAPS (gut and psychology syndrome) diet.  From what I understand, it’s like a mix of the SCD and the Weston A. Price Foundation principles.  This is the diet I point people to now.

GAPS: Gut and Psychology Syndrome by Dr. Natasha Campbell McBride
http://www.gapsdiet.com

After having A#1 on the diet for a few years, I noticed that I too have a gluten intolerance.  I was in denial for the longest time, but when I realized my morning sickness symptoms were exactly the same as my sister’s gluten intolerant symptoms (yes, it runs in the family) I was finally convinced.  Apparently it hits me much harder while pregnant.  I was able to enjoy my last pregnancy almost completely morning sickness free!

Back to A#1, now he’s 10 1/2 and doing superbly awesome!  His pediatrician a few years back told us to just forget the diagnosis.  Aside from a few quirks (salad spinner, driving us nuts with computers and lawn mowers), he’s a perfectly normal boy.  Well behaved, social, loving, intelligent, all around awesome kid.

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I love talking nutrition and kids so if anyone has any questions, please ask.  Email me or comment below.  I’d love to hear from you.


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33 comments to Our Journey with Autism

  • LOVED reading your son's story, Melanie!! Thank you so much for sharing! I'll be posting it to my FB page. Did you know that Dr. Natasha Campbell-Mcbride created GAPS specifically to heal her own son's autism? I used to be an ABA therapist, but once I learned the truth about the gut connection with autism, I couldn't stand "treating" kids with behavioral therapy when this is what they truly need! So I quit. And now I'm pursuing a career as a GAPS practitioner! Food heals. Most important lesson I've ever learned! :)~Emily

  • That is so great! Now you are treating the cause not just the symptoms 🙂 Since writing this post I have read the book and went through the intro diet with my kids. So glad I did! I've been planning on going back to school once the youngers are olders and am hoping to one day be a GAPS practitioner as well. I know so many who have tried changing their kids diet but due to lack of support and knowledge, thought it didn't work for them. I'd like to change that.

  • NANCY

    Great story so glad your son is doing so well. The effort and time and patience for this type of life change is tremendous. Kudos to you, you are a very strong and loving women.

  • […] come a long way in our healing journey.  Kiddo #1′s doctor told us to just forget the autism diagnosis but there are still a few issues here and there.  Three of us do have gut issues (one is […]

  • Laura N.

    I just came across your blog (linked from Kerry Ann), and I think we’re living parallel lives! I also have 4 boys in the same age range … oldest just turned 11 and was ASD but thanks to GAPS diet, no longer (though he can be pretty obnoxious and obsessive at times, yes!). I’m also an avid knitter, guitar player, have linguistics background (went to SIL and met my husband there, so never finished linguistics degree).

    Needless to say, I’m going to be following your blog now! 🙂

    • Melanie

      Oh my goodness! I have goosebumps! When we’re you at SIL and which one did you go to? I was at UND ’97 and ’98. That’s insane! Met my husband at SIL too 🙂

      • Laura N.

        Sorry, didn’t see this until now. We were in Dallas in 1998. Too funny! We didn’t finish … we got married instead and started having kids. 🙂

  • Jessica

    Hi, Melanie, my daughter undiagnosed had the same symtoms as your little one. doing everything in her power to not look at us when we were holding her as a baby. I knew right away what it was and just removed the gluten and casein in her diet. she does well with behavour but she is constantly constipated, and reliant on restoralax. just wondering from your experience if you ran into that problem after removing gluten from your little ones diet?? every tells me she’s constipated because she doesnt eat gluten. she eats lots of gluten free grains and beans to replace fibre but not helping. maybe you could right a journal for a day of your childs eating habbits??
    any advice would be helpful. im going to look at those books you suggested on diet as well.

    • Melanie

      I’ve heard the same from others too, thinking not eating gluten might cause constipation. Removing for your diet has nothing to do with constipation. I think people get that idea thinking that if you don’t eat bread, you don’t get enough fiber. So not true. Bread is just one small source of fiber. As long as she is eating veggies and other grains, that shouldn’t be the problem. We never dealt with constipation, only the opposite, so I really don’t have any advice in that regards. Increasing probiotic, like with fermented foods or even a supplement, is the best remedy I know. Good luck!

  • Jessica

    ok, well looks like im on the right track. shes on a probiotic supplement, she eats lots of veggies a gf grains. im just learning to lacto ferment but seems every batch i make spoils unless i put a probiotic supplement in it. i think my appartment is no good for fermenting. my milk kefir grains went to mush. my kombucha always tasted a little funny and so did my water kefir grains. i think its best if i just buy commercially LOL. if only i could buy water kefir already made in stores LOL
    thanks again
    cheers

  • Susie

    Thanks for putting your story out there for other people to read. I am
    learning more about nutrition and autism. Thanks

  • […] favorite ferments (yogurt is fermented dairy).  I jumped into yogurt making when we put my oldest on the SCD (specific carbohydrate diet) and I was told buying yogurt from the store was not good enough. […]

  • Shellye

    Cute boy. We are going through this stuff now. Takes a while apparently…we have seen nice improvements but the waiting is the hardest part. Thanks for sharing your story – it’s encouraging.

  • Tara

    Ah, I love reading about other peoples success with treating autism with diet! We’ve been doing a combination of the GAPS diet and the SCD Diet to treat my 2 boys who started out as moderately autistic with wonderful results for about 2 years now. The next step for me it getting more into lacto fermentation and from what I’ve seen anaerobic lacto fermentation is the best way to go. I still believe we have a lot more ahead of us, but reading success stories like yours is such a tremendous encouragement! Thank you for taking the time to share your story! For those of us on the same journey it is truly invaluable 🙂 We’ll be homeschooling my eldest, who is now 6, and will be doing a normal, non modified curriculum this year. Something that at one point seemed completely impossible!

  • Loved your story! My twin boys and I struggle with wheat and cow dairy intolerance, and my husband is starting to show signs of it as well. My boys are both high functioning ASD, mainly because of food modifications and supplement/probiotic additions. I try to eat 95% wheat and dairy free, and my boys it is closer to 80%, as Daddy is still in denial. I have been dabbling in fermenting foods for years; my favorite being very strongly fermented coconut water and maple syrup / molasses kefir and raw coconut yogurt kefir. I had never heard of the GAPS diet, and would like to buy the book, but your amazon link above does not work. I want to make sure I click through your website, so you get the credit. Please revise the link above so I can buy the book and give you the credit. Thank you for your inspiring story!

  • i posted a link to this site on my fb page i hope its ok. i agree with all of this and am so grateful for your “testimony” —do you listen to Alex Jones at all? cause we do and he talks about this issue as well. He promotes autism reversal with diet as well. Hope to see you soon at the farmers market!

  • It was so great to read your story. My daughter has an autism diagnosis, and has been on SCD for 2 years now. She’s 5 1/2, and has nearly outgrown her diagnosis. Hooray!!!! I love finding others with similar life experiences. Again, so glad to have found your blog!!!

  • Alexa Johnson

    Melanie! I am in Williston. My mom’s friend told me about your site! What a treasure trove! I have 4 boys, 2 of them autistic. I have been flirting with gaps for over a year now but haven’t taken the full plunge. I am also afraid my new baby might have it….wheat and dairy allergies, very fussy and clingy, very sensitive senses. Can you add me on facebook? I know you are very busy, but your success with your son inspires me! i have questions for you! thank you! I am active in the startup of a wapf chapter here in williston. we are doing the nourishing our children class right now. add me: alexa orts Johnson

  • Beth

    Hi Melanie! I have been contemplating the GAPS diet for about a year now. My son has never been given any kind of diagnosis but he has quirks and other behaviors that have always been a challenge, and he has food allergies that only affect his GI tract. Anyway, I was wondering if you would share whether your son is socially appropriate with his peers and whether he has some friends…these are two areas that I am concerned about with my son and wondering if the diet could help. Also, did you notice any changes right away with SCD or did it take months to see anything? Thank you so much for your blog!

    • Aside from normal teenage social awkwardness, I would say he’s very socially appropriate for his age. I did notice some changes pretty quickly, within a few weeks but more so after many months of being on it. Every child will react differently. Some kids notice a significant difference right away and there are some who need more than dietary intervention. Also, the earlier you start the better.

  • Shaniqua McLeod

    Hello

    You have an awesome story. It was all too familiar. My son is 7 and he was diagnosed at 3 with high functioning autism and just recently ADHD. He is currently on medication Methylin for ADHD and I really want to get him off of it cause I know its just hiding the true issue. I am very torn because a part of me is like I see how my son was meant to be with the use of the medication. We are having conversations now which is amazing but again I know its due to the medication. My son is not 100% GFCF but we have incorporated the diet into our life. But we struggle because he is a picky eater/resistant eater so thats why I allowed him to eat his 3 favorite snacks that unfortunately have gluten in them. One day I want to be where you are and I was just wondering how you did it and if your son was a picky eater. If only my son ate food. He has such a limited diet.

    Thank you for story.

    • By all means, if you are seeing great improvements on the medication, that may be what he needs for the time being. I always say there is a time and a place and I am grateful for modern medicine in many areas. Don’t feel bad about giving him medication if he needs it. It might happen, some day, when his gut is healed enough, that he might be able to begin to wean off of them but don’t fret.

      What are his 3 favorite snacks? Maybe we can come up with a gluten free version that he likes? For us, we were able to start the diet when he was very young. I do think that made a big difference. He was picky but he wasn’t set on having foods outside the diet. We did work with him for a few months with a occupational therapist, just on getting him to try new foods. That helped a lot.

      • Shaniqua McLeod

        Hello again,
        In response to your comment. My son loves Lorna Doone Cookies, Club crakers and animal crackers. The hardest one is the club crackers. I could never find a GFCF cracker he liked. He is also in OT so I saw this as the perfect opportunity to start introducing new foods cause I know she could help me. What kind of foods did you make as fermented?
        I would love to see your ideas as far as foods you made for your son.

        Thank you

        Shaniqua McLeod

  • Jennifer

    Thank you for sharing your story, Melanie. You have been most inspiring! My son who is now 6 was diagnosed at age 3 with ASD, high functioning. Though we did GF/CF in the States, since moving to Kenya as missionaries 6 months ago, it’s been a real challenge. I noticed your recipes page – is that where I’d find ideas as to what to eat? (I also have the GAPS book and yet I’ve not implemented the GAPS diet, but now I’m feeling quite inspired.) Thank you, again for sharing.

    • I’ve always wondered how hard it would be to do a diet like GAPS in a different country. My recipe page has recipes that are all gluten free but not all are GAPS legal. We’ve been off the GAPS diet for a few years now but continue to be gluten free and mostly dairy free.

  • Tish

    I just wanted to mention that there has been some recent research finding a connection between autism and the MTHFR genetic defect. The defect prevents detoxification. Supplementation with a form of folate called 5-methylfolate and methyl B12 can overcome much of the impact of this defect. http://www.jpands.org/vol9no4/boris.pdf

    You can read more at: http://mthfr.net/ Basically, a super natural healthy diet helps with this condition because of it’s low toxicity and higher levels of the proper form of folate.

  • Yay! So glad to have found another mom who has successfully treated her child with diet! My son starting showing ASD signs by 14 months of age, and we immediately did as much research as possible and switched him over to the GAPS diet. That plus homeopathy and therapy has made a world of difference. He is now four years old and doing wonderfully! He is in a mainstream preschool, though he still had an aide that helps facilitate social language when necessary. They tell the aide will be faded out in the next year or so. And I can honestly stay there are few signs of autism left. He is just the most social, warm and loving child and I couldn’t be more grateful. My second child was born with the same gut issues, but we put her immediately on the same diet. She shows no signs of autism. I blog over at peaceloveandwellness.com, where I talk about our journey. Thanks for getting the word out there. I hope more parents start to find out that gut health means the world when it comes to autism (and many other conditions)!

  • Elise

    today, I made time to connect again with others who are dealing with “gut” issues. I’m so glad I did. just reading Melanie’s story and reading the others posts from everyone has elevated me to a place that feels so less alone.discomfort, more normal stools, less tummy aches. he doesn’t have autism, but I worry about his bum and his tummy. he had rectal prolapses when he was two and three, and I’m still scarred from them and scared. I used to plan my life around his BM’s.it feels good to just let this out.

  • Paul

    What was the severity of your son’s autism?

  • Deepak

    My son is a picky eater, and being of Indian origin, very difficult to get him eat which is there in GAPS diet, can you tell me what is best food i can give him, he has got high constipation, i know something is wrong with his gut, but food which I m giving is not working out, please provide me sometips

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