Single Moms Raising Autistic Sons


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Saturday, February 06, 2010

The False Prophets of Autism. by Lisa Belkin

When Dr. Andrew Wakefield — the British doctor who linked vaccines to autism — was found to be “dishonest,” “irresponsible” and acting “contrary to the clinical interests” of a child by a medical-misconduct panel last week, and when the respected medical journal The Lancet officially retracted its publication of Wakefield’s 1998 study earlier today, those were but the most recent controversial moments in the medical mystery that is autism.
For more than a decade, parents who believed Wakefield’s claims have accused doubters of playing roulette with the health of their children. But those who questioned his views have charged that his results are not replicable, that he has financial conflicts of interest and that he is spreading fear for his own gain.
Liane Carter has read all the news reports out of Britain with their mix of predictions that this is the end of Wakefield’s career as a researcher (he now runs an autism clinic in Austin). But some parents promise to follow him anywhere. To Carter, it all sounds numbingly familiar. In a guest blog today, she describes her frustration with those who prey on the desperation of parents with unfounded promises of an answer. Time spent on false hope, she writes, is time wasted on finding an actual cure.


CURE DU JOUR
By LIANE KUPFERBERG CARTER

Two years ago, Jenny McCarthy, the actress turned activist, said she found the cure for her son’s autism. Since then, I’ve watched McCarthy and her autism advocacy group, Generation Rescue, lead an ideological, unscientific crusade against childhood vaccines.
Oprah has signed a deal to sponsor McCarthy in her very own talk show. I’ve listened to McCarthy’s announcements that her son Evan “is no longer in the world of autism.” He is, she says, “recovered.” It makes me cringe.
I don’t know what “recovered” looks like. I’ve heard people throw this term around, but I’ve yet to meet a child who is “cured” of autism. You could say that any child receiving therapy is “in recovery.” I’ve seen many kids who have made good progress in a therapeutic setting, my own 17-year-old son included. But most of these children still are and will always be autistic.
I’ve watched in anger as McCarthy plugs her books to Diane Sawyer, Larry King and People magazine, telling the world that the gluten/casein-free diet or biomedical treatments for yeast and metal toxicity have fixed her child. She draws the analogy that alternative biomedical treatments for autism are like chemotherapy for cancer: some patients benefit, many don’t.
True enough. But there are far more of us in the “don’t” category. Behavioral therapy still remains the gold standard in treating autism. When our son was not yet 2, we immersed him in all the mainstream treatments: applied behavioral analysis, speech therapy, occupational and physical therapy.
But for good measure, we also dipped our toes in the biomedical pool. Our only rule: whatever we tried must be safe, pain-free and noninvasive. We tried the gluten/casein-free diet and probiotics and spent our savings on cranial sacral therapy, auditory integration therapy, homeopathy and food-sensitivity testing.
Those were the years that the Autism Research Institute first launched DAN (Defeat Autism Now), a protocol of biomedical interventions, so we consulted the local DAN doctor too. He charged thousands of dollars, most of it not covered by insurance, yet his waiting room was packed. Over the course of a year, he offered one cure du jour after another, quick to take advantage of our desperation. Finally, he insisted our 4-year-old had stealth birus. He urged us to give him a cytotoxic drug called ganciclovir then being used for AIDS patients and other severely immuno-compromised people.
“How many children have you treated with this?” I asked.
“I’m treating one patient right now,” he said.
That’s when we fled. In the years since, we’ve watched so-called miracle cures come and go: secretin, a pancreatic enzyme; intravenous gamma globulin; the “metabolic enhancer” DMG; hyperbaric chamber therapy; mercury chelation; stem cells from China; the Lupron protocol, a form of chemical castration. All junk science.
There’s nothing wrong with reasonable hope. Parents need to cling to something. I still fervently believe that early intervention is critical. With therapy, 40 to 50 percent of the children who are diagnosed at age 3 gain enough skills to be mainstreamed by 6, though many continue to need special educational and social supports. A small but provocative study released at IMFAR (International Meeting for Autism Research) suggests that 10 percent of children with autism improve sufficiently by age 9 so that they no longer meet diagnostic criteria for the disorder. Significantly, most of these formerly autistic kids got intensive, long-term behavioral treatment soon after diagnosis.
It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.” McCarthy, who describes herself as one of a tribe of “warrior moms,” seems to imply that if our kids are unrecovered, it’s because we didn’t do the diet right, weren’t willing to let doctors inject our children with unproven drugs or somehow just didn’t love our children enough.
I’ve heard McCarthy say on national TV, “Evan is my science.” I’m sorry, one little boy is not “science.” Warm and fuzzy anecdotes don’t do it for me. Give me hard science any day, with its double blind studies and rigorous peer review.
I don’t doubt that McCarthy loves her son. But the vast majority of our kids are not going to be cured. It’s time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis.

6 comments:

Melissa H said...

LOVE THIS, Lora!! Thanks for posting!

Jean said...

Excellent post...really hit a chord with me xxx

Petunia said...

Fantastic post Lora xx

Adelaide Dupont said...

Throughly agree that treatments must be safe and non-invasive. I do not know about pain-free!

(First do no harm...)

And a lot of parents do not necessarily run when they hear, "Only one child is being treated".

ann said...

Hi:

I have such admiration for you single mothers. I don't have a child with autism but I have hyperlexia so I can look at your challenge from another point of view.
Four years ago I was diagnosed as hyperlexic. Twenty years earlier I was diagnosed as dyslexic.
In fact I have varying degrees of both. Hyperlexic means lack of comprehension coming from an inability to image words. I was diagnosed by Lindamood-Bell (www.lindamoodbell.com) and discovered I had grade three reading comprehension skills. I took seven weeks of retraining my brain - four hours a day, five days a week at Lindamood-Bell learning how to image. I moved my comprehension level to Grade 9. This process is very painful but produces results. Then I came across the Masgutova Method: http://www.masgutovamethod.com. And, I just wished I had known of this system before going through Lindamood-Bell. I am sure the latter training would not have been so painful. Masgutova focusses on correcting reflexes that don't develop or develop improperly when the child is in utero or the first three years of life. I discovered there were many for me. Now that these corrections have been made my body, mind and spirit are in good shape. I am relaxed even though both the dyslexia and hyperlexia do emerge unexpectedly. Masgutova has specialists all over North America. Many of the children they work with have autism. You might want to check out her website:
http://www.masgutovamethod.com for more information.
If you want to learn more about my experience check out my website:
www.dyslexiadiscovery.com
All the best.

Veronica Lee said...

Hi! I'm visiting from MBC. Great blog.