Pity poor Jenny McCarthy. All she did was cure her son’s autism by changing his diet, and then — overwhelmed by gratitude — promised God she’d testify to this miracle on every talk show she could get on and then she landed at the bottom of an Internet pile-up of raging parents whose anger seems to have taken her by surprise. ”I mean, I don’t know,” she says. ”I’m just trying to help, giving people hope.”

Quoting her verbatim is one of the problems.

Okay, she does have some decent points on her side. She and her boyfriend, Jim Carrey, argue that researching the link between autism and vaccines is imperative and should be fully funded and they’re absolutely right. Government’s fear that a rumored link between the epidemic rise in autism and the increase in the childhood vaccination schedule will keep droves of new parents from inoculating their babies won’t go away with less information, no research and a handful of judges dismissing the link.

The problem isn’t the argument she’s making so much as the degree to which she carries it. She sometimes sounds — well, I don’t know, maybe not so bright, and she’s taken on a thorny issue where words need to be chosen carefully. “I just cleared up his funguses and changed his diet and now — this is important for everyone to know — he’s totally cured.”

She’s been outlining her protocol so everyone can jot it down and start in right away:  wheat and dairy-free diet, anti-fungal treatments and voila!  Autism recovery.  Some of this might come as news to the general public, but hardly so to any parent of an autistic child where the diet is celebrating its second decade as a treatment for children with gastrointestinal issues and developmental delays.  Anti-yeast protocols are also as old as the hills and she’s right about both — they help a lot of kids.

They’re effective treatments in addressing a complicated constellation of problems that besiege these children. No one begrudges her enthusiastic support of the alternative therapies we’ve all turned to. It’s the word choice she’s using.  He’s totally recovered.  I cured my son.

One has to give Jenny the benefit of the doubt and assume she doesn’t realize the powder keg she’s ignited in the army of parents who’ve fought the battle for years, believing/hoping/praying early on it might be this simple. Every parent I know remembers an optimistic period of great gains, of privately thinking, could this be behind us? But all these parents also know the thrill of improvement is part of the frustration — if a food allergy was the problem, why isn’t diet the whole solution? Why is he better, but not yet cured?

Doing battle with autism has taught every parent different lessons but, from my experience, one universal one is letting go of overly simplistic terms. Until Jenny came along, I’ve literally never heard any mother say, “I’ve cured my child.”  Even the mothers of children who’ve grown into extremely high-functioning teenagers, shake their heads and admit, the problems are different, but still loom large and are just as worrying: anxiety, depression, non-existent social lives.

What most of us have learned by watching our children is that autism and the mysterious orchestra of tics, compulsions, and obsessions it brings along, moves into a body and doesn’t leave easily.  Slowly, we’ve made our begrudging peace. Autism isn’t always the enemy because, look, here it is, so much a part of this child I love. Our son, Ethan, 12 now, is better, certainly, and better means a great deal to anyone who has spent years as we have, teaching language with flashcards, every rudimentary basic of  play and interaction. Better is a blessing that should never be discounted. But cured? No.

My initial response to Jenny’s circuit of TV guest spots isn’t anger so much as sadness for the scores of parents she’s preaching an over-simplified “hope” for and the complicated re-adjustment they’ll have to make down the line when their child improves but never seems totally cured. But I also wonder — and I admit this is speculative and probably unfair — about her son. Most of the enraged parents are saying if he’s cured now he must have been misdiagnosed initially. I don’t know about this. My instinct says that autism is a label one so desperately dreads that she would never have gone public with what might have been a misdiagnosis. Maybe she and her son are among the lucky few that will walk away without a vestige of his autism.

But wait: she has admitted he still has a pinch of auditory processing delays. ”Sometimes people talk a little fast and he has to say Slow down!  Sometimes the world can get a little loud for him.”

Okay. So maybe he’s not 100% “cured.”

She also admits he still gets a “little speech therapy” to smooth out the rough spots. But here’s the important point, she says, leaning across the desk to Larry King who’s having his own trouble making eye contact, given the low-cut dress she’s wearing on his show:  “He’s not autistic.”

Now I start to wonder if she’s just playing the re-naming game.  Lots of us have done this:  Shuffled labels and picked the vaguest ones possible so we can call our children anything other than autistic (OCD, PDD-NOS-all of these have very distinct meanings, but I sometimes think we parents take comfort picking and choosing.) Looking back, I also know from experience this doesn’t really work.

No one wants their child labeled autistic, but once you make your peace with it, enough to admire some of its components, you see that autism gives its sufferers a whole fascinating dance of pleasures and comforts. Why is hand flapping and pacing such a happy thrill? Why squeal and bounce and cycle through lines from your favorite movies? None of us who aren’t autistic will know, but I will also say this: it’s a marvel to watch and it’s especially hilarious at night when your spouse comes back to the TV, a dish of ice cream in his hand, and does a little imitation. It’s a daily concert we have playing in the background of our lives and mostly it’s a happy one (odd but true — most of the autistic kids I know are pretty happy kids.) I don’t think I’m quite on board with the “don’t cure us” crowd. If I could cure my son, I certainly would. We’re still trying, still dragging ourselves to doctors and therapists, but certainly not at the expense of his happiness or peace of mind. I hardly ever say ”Quiet hands,” any more unless he’s driving me absolutely crazy, by which point I usually say, “For God’s sake sit down and be quiet, Eth.”

But what if all his oddities were taken away? What if it became very important that he never look odd (or autistic) again because, say, his mother had been on TV announcing, “All that is behind us.” What if he could never squeal with happiness or let his hands flap with joy again? For Jenny McCarthy’s son, maybe it really is all behind him or maybe she’s given him one more battle to add to the fight, without his private comforts to help.

I don’t know, but I’m just thinking it might be a little bit sad.

Photo by planetc1

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