Last night I was flipping through the channels and caught a segment of 20/20 featuring Jenny McCarthy. I stopped to watch it, because I remember reading her books "Belly Laughs" and "Baby Laughs" while I was pregnant. Coincidentally, her son's name is Evan also.
I was surprised to hear that her son Evan is autistic. I was even more interested to hear the story of her & Evan's journey because CHARGE kids are often described as having "autistic-like" behaviors. She has become a huge advocate for a controversial view that autism can be "healed." With major dietary changes--a gluten (a wheat protein) and casein (a milk protein) -free diet--and intensive therapy, she reports that Evan's autism is being healed. The idea that autism can be reversed is not accepted by mainstream medicine. Many doctors have told McCarthy that Evan must have been mis-diagnosed to begin with.
I have to say that Evan's initial symptoms (seizures) and behaviors sound almost identical to a case I saw on one of those mystery diagnosis shows on Discovery Health. This particular little boy was about the same age as Evan and started having seizures and becoming withdrawn. The doctors couldn't figure out what was going on--it was his mom doing research online that ran across the diagnosis of Celiac disease (gluten intollerance damages the lining of the small intestine, and the body can't absorb nutrients). Once the boy was put on a gluten-free diet, the seizures stopped and he gradually returned to normal. This boy was never diagnosed with Autism--just Celiac disease. And I have a friend who's son is profoundly autistic and also has a gluten intollerance. If he does inadvertantly eat something containing gluten, his behavior changes dramatically. But even though he has been on a completely gluten-free diet for several years, he is still autistic. Obviously, there is an underlying complexity to the relationship between gluten and autism.
On a personal level, I am inspired to see someone "famous" deal with special needs, and use her celebrity to advocate in such a positive way. I remember shortly after receiving (my) Evan's diagnosis, thinking that "this" never happened to anyone famous--movie stars and models and athletes always seemed to be blessed with perfect children. The statisitcs on the incidence of autism are alarming, and I guess it would be surprising if there were no celebrity family touched by it.
Jenny's story is touching--so many parallels to our story. Listening to her describe how betrayed she felt--because she thought some of the quirky behaviors were just unique to her son, but turned out to be caused by autism--I felt a little shiver...hand flapping, being obcessed with fans or other objects that spin--that's my Evan too. I learned at the CHARGE conference, these behaviors are common with multi-sensory impairment...but they are still a little disconcerting.
If you are interested I have posted the links to the 20/20 report, and also she was recently on Oprah as well.