Sunday, September 4, 2011

An Interview With Sunny, Whose Child Is Autistic

Another insightful look into the world of autism is the movie "Temple Grandin."
Temple Grandin is an autistic woman who later earned a PhD for her work
with animal behavior, namely cows.

A year ago, Sunny’s two-year-old son, Wyatt, was diagnosed as being autistic. Now three, he still exhibits most of the symptoms associated with autism: stimming, a lack of any verbal and very little non-verbal communication, rocking and banging his head, and poor eye contact. Over the past year, Sunny has changed his diet to a gluten-free, casein-free (GFCF) elimination diet and has seen a change in his behavior.

ME: How did you first learn about the gluten-free, casein-free diet approach to autism?
SUNNY: I was looking through a gluten-free cookbook that I’d borrowed from a friend who has Celiac disease and it talked about how gluten affects people with autism. So I followed up and researched it more on the internet.
ME: What was Wyatt like before you started the diet?
SUNNY: He used to scream and throw himself down and throw tantrums. He’d bite me and pull my hair. I couldn’t discipline him. Sometimes I’d try and he’d just get worse and pull my hair harder and laugh.
ME: But he’s not like that now that he’s not ingesting gluten and casein?
SUNNY: No. He’s like a different person. He smiles and interacts with us. He tries to pronounce words, not just make squeals and squeaks. He’s a lot calmer and loveable.
ME: Do you know why gluten and casein affect him like that?
SUNNY: From what I’ve learned, gluten and casein act like a drug in him. He gets the same kind of reaction.  He gets crazed and wants more and more. And then you have to basically detox him again after he’s had it. His body can’t process the gluten and casein. It turns into peptides, which is like a morphine buzz, and then he has tantrums and gets vicious. I wonder if the morphine effect even blocks him from having pain because he does stuff that should hurt him, but he just laughs and goes on.
ME: Did the doctors mention the GFCF diet it to you?
SUNNY: No. Not at all. The doctors scoffed at me when I mentioned it at Children’s Hospital. When I kept pushing it, they said they’d heard of it, but that it wasn’t scientifically proven to be effective. They acted like I was doing something wrong; like I wasn’t giving him something he needed in his diet. But when I explained to them that I was using fresh fruit to make pancakes and using wheat-free and gluten-free flours, they said what I was doing was okay.
ME: Do you know whether autism groups endorse it?
SUNNY: Oh, yeah. It’s on every autism site I look at. They all talk about what a difference the GFCF diet makes. But still, the doctors won’t even mention it. It’s crazy.
ME: I know gluten is in wheat and other grain products, but what is casein?
SUNNY: Casein is the protein in milk. But sometimes it has hidden names on labels, so it’s hard to identify. Sometimes it’s called caseinate. Sometimes it’s not listed on the label at all. It can be in soy products, but there’s no mention of it.
ME: I imagine it’s hard to find foods.
SUNNY: Very hard. It’s getting a little easier to find gluten-free foods, but it’s hard to find gluten-free AND casein-free foods. Gluten is hidden in other ingredients, too, like MSG or malt flavorings. And it’s in all kinds of things you don’t know about: make-up, lotions, soap, shampoo, glue, Play-doh… all kinds of things. I’ve taken all those things away so that he doesn’t absorb gluten through his skin.
ME: And you found out it’s in paper, too.
SUNNY (nods): Yes. I didn’t realize it at first, but then Wyatt started chewing his books. He shut himself in my bedroom and literally started eating his books. I took them all away, but he still wouldn’t come out of my room for two days. He wouldn’t do anything; none of the things he usually likes to do. He started screaming and pulling my hair again, and throwing tantrums. It stayed in his system for a full week. And since we didn’t have any books or paper around, he started looking for other things to chew on: clothes, and the tags in our clothes. He was like a drug addict searching for a drug.
ME: Had he ever had reactions like this before?
SUNNY: Yes. One time he had a piece of a bun from McDonald’s and you could see the change in him that night. He went wild, biting and screaming. It took him four days before it went through his system and he was calm again.
ME: What did the doctors say?
SUNNY: They said there were some drugs they could prescribe.
ME: But not the diet?
SUNNY: Not the diet.

The gluten-free, casein-free elimination diet has been endorsed by numerous families of autistic children but is still commonly dismissed by the medical community.

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