"Why we parents are so angry"

Almost immediately after I published my previous post, the attached came in over e-mail. I was originally going to add it to my previous post, but this deserves a post of its own.

I can't take credit for any of the below. The credit goes fully to Nancy Hokkanen. I could have written every word....


Posted to the public Yahoo Listserv "Evidence of Harm" by Nancy Hokkanen on 3/27/07:

"The following paragraphs might help explain the harsh tone of some parents on the EOH listserv and others. It’s difficult to keep your emotional bearing when the facades of reality rise and fall so chaotically after your child is given the psychological label of autism spectrum disorder.

First, the psychologists recommend behavioral therapy. If you can afford $60-$100 an hour, it buys quiet time for the parent and maybe your child will learn some basic skills like holding a crayon. It’s more likely he’ll model hitting and head-banging from the other kids.

You take your child to the local research university. They get paid to watch your child have tantrums. They issue epidemiological studies. They take up office space and tax money and oxygen.

Next, the psychiatrists recommend psychotropic drugs. Maybe some symptoms will abate for a while; maybe the pills make your child regress. Maybe Risperdal makes your little boy gain weight and lactate. Maybe Adderall makes your child psychotic and your neurologist says sagely, “Usually if one doesn’t work, the other one will.”

Incredulous that there’s no magic pill (this is America!), you search the Internet for options. You learn a new lexicon involving biochemistry – what the h*ll is the Krebs cycle, anyway? – and dodge around shady sites with suspect claims. Somehow you find the websites for Safeminds, No Mercury, Generation Rescue, Put Children First, Autism Research Institute, Boyd Haley, PhD’s Thimerosal links, and others.

When you return to your physicians with questions, they reach for the old standbys– the PDR, the AMA and AAP journals, the CDC PR sheets. If you ask about “alternative medicine” instead of “best practices,” you are immediately labeled as a kook. If you are inquisitive enough to procure lab test results from Great Smokies or Great Plains or DDI, the labs’ credibility is called into question.

You try biomed and some things work but others don’t. You record symptoms and side effects and constantly read and second guess yourself. Your shelves are full of pill bottles that your child may or may not be able to swallow. The costs are not covered by insurance companies, though you write letters to the HMO board.

Your son’s medical tests show the biomarkers of mercury toxicity and you consider chelation, but you worry about whether the DAN! protocol redistributes mercury as is claimed on another biomed listserv. Meanwhile children with lead poisoning get sympathetic media articles, government funding and occupational physicians to guide the detoxification process.

You try to discuss biomed with other parents in your region, but most are comfortable with abrogating responsibility for their child’s health to so-called experts. Their helplessly vague attitude is that if something is really wrong, someone will do something.

Your friends and family members try to help you by downloading lame articles from the Internet – unabashed propaganda from Dr. Paul Offit, or the pronouncement from the IOM, or reassurances from the CDC. You try to explain about conflicts of interest, the 2001 evidence of predetermined IOM conclusion, the missing Vaccine Safety Datalink. But your loved ones’ eyes glaze over as your revelations threaten their carefully constructed reality. You’ve found their limits.

You schedule meetings with legislators, but they are busy trying to comprehend the implications of dozens of bills simultaneously. You have a mercury hearing at your state capitol, but the time is insufficient to explicate the data. And you’re competing with blatant misinformation from pharma-funded lobby groups posing as citizen advocates. You show up in your ancient suit and Payless shoes while the pharma lobbyists stroll the Capitol in Brooks Brothers and Bruno Magli.

You meet with your state Attorney General. He frets about his campaign image. You meet with the Department of Health. They say things in private that they won’t in public. You meet with the Governor’s Health Aide and hand her a one-inch-thick stack of papers on mercury. She says, “I’m not going to read all that.” You suggest she find someone who will.

You dredge up cost statistics and incidence statistics and prognosticate -- because even though your state has autism specialists, no one is noticing that 1 in 80 boys has a developmental disability and 1 in 5 receives special education services. Yoo hoo, anyone home?

You're even more demoralized and need someone to talk to. When you talk with your pastor, he smiles and nods and says he’ll talk to the bishop. But unless you are a Methodist, nothing will happen soon and besides, you have to attend meetings wondering why membership is decreasing though you don’t welcome gays and people with disabilities.

And somewhere in here you are fighting the County to get services, fighting the public school to get services, fighting and fighting and trying to maintain some sense of pride, dignity and order in your home that’s been turned ass over teakettle, figuratively and literally, by the random and irrational behaviors of a child who may or may not be toilet trained and may or not be healthy.

By this time you don’t trust anyone but other autism parents who are using biomedical treatments, a few legislators and researchers. But within this alpha group is often divisiveness and anger to spare, born of painful knowledge and negative experiences.

You see the marchers outside abortion clinics and finally understand their conviction in protesting a practice they find morally abhorrent. But when you march against mercury in vaccines, you run the risk of being labeled a “hysterical desperate parent” by people inconvenienced by your family’s truth.

The inconvenience will only increase starting in 2010, and in 2015 all the little children overdosed on mercury in 1997 will be turned loose on the dole of American taxpayers. Combine that with the Baby Boomers and Iraq war debt, and envision that financial reality.

The body count is appalling – helpless children who wander off and drown, or are murdered by family, caregivers and strangers. Thankfully so far no parent has taken up a gun to make a public statement about vaccine mercury’s link to autism – perhaps realizing that going to jail deprives the child of a primary caregiver.

I can understand why no public figure wants to be responsible for setting off a public furor. I don’t see the Federal Court relishing that role, either.

In all this, there are two consistent truths:
1. Even at miniscule concentrations, mercury is a neurotoxin.
2. People make mistakes.

People are basically selfish. The key to engaging public discourse is to show people their personal investment in the autism/mercury issue – with their health, and with their wallets.

And with all these realizations and disappointments whirling in your mind, you keep them to yourself and shield your child from any sense that he is not welcome in this world. You give advice and praise and love, and if you’re lucky they give love back, and that has to be enough."