Interesting. Yesterday, commenter Shelly Tzorfas asked "what if autism were contagious?," and I remembered a post I wrote in 2008 for Huffington Post. This was back when HuffPo had contributing writers who controlled their own work. I was able to log into the blog backstage with a password and publish my work. There was no pay, but the platform was really important for me to build my "brand" and prepare to launch my memoir. And I was passionate (still am) about telling my family's story in order to help others. Even when it earned me ridicule and online scorn instead of a paycheck.
After one of their sales to another media company, HuffPo stopped allowing writers to publish their own work. I could still go into the site, write and post my work, but I had to wait for a staff member to approve and publish the post. After a while, they stopped publishing my posts at all. I wasn't too happy about that. I had a huge following and my work generated comments and controversy - the lifeblood of a blog.
Today, HuffPo has removed their contributor platform entirely. When I went to find my old post, I found this disclaimer, "This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email."
And so, without further ado, here is my old, possibly abusive post. Wink!
What if Autism Were Contagious?
Tell me why our doctors and national institutions and even charities have abandoned children with autism, instead of setting out to conquer this neurological crippler.
Two controversies are swirling in the autism world. The first is over the safety of vaccines as they may relate to the cause/onset of this life altering disorder. The recent airing of ABC's Eli Stone episode about a woman who sued a pharmaceutical company (and won) on behalf of her autistic son brought the vaccine Hatfields and McCoy's roaring into the headlines, even as the American Academy of Pediatricians demanded the program's censorship. (You can read about that HERE in David Kirby's Huffington Post piece.) The second is the whether or not there is any epidemic at all, brought up by Dr. Nancy Minshew, who runs the Center for Excellence in Autism Research at Pitt.
The media reports almost daily that drug companies have misreported clinical trial results, marketed ineffective drugs, and lied to doctors and consumers alike about their products' efficacy and safety. And yet we're expected to believe that the dozens of vaccines administered to infants and toddlers are 100% safe, 100% of the time, for 100% of children, and have absolutely no connection to autism. Man, that's harder to swallow than one of those horse sized prenatal vitamins the OB's dole out along with that mercury laden flu shot.
When I write about vaccines and autism and the desire for better safety testing, I often get the same response from people: "Do you want Polio back?" My instinct is to slap them. Such a stupid question. No one wants Polio back. But that question has led me to the question, "What if autism were contagious?" Would the response to the 1 in 150 rate of diagnosis change from, "Oh my, what a shame. We'd better learn how to diagnose it earlier." to "We'd better figure out the cause and come up with treatments immediately!" Would we go into attack mode as we did for AIDS, which in 30 years has seen great improvement in prevention and treatment?
If you think the photos of the old Polio wards are frightening, take a day off and go visit a classroom for children on the severe end of the autism spectrum. You'll see children who are ambulatory and yet cannot care for their most basic needs. They will require a lifetime of care. Can you tell me that these children are not as disabled as those who contracted Polio?
Then there's the "epidemic" question. It's as if someone at the top decided, "It's time to make autism appear to be less of a threat." following that Eli Stone episode. Dr. Nancy Minshew, who heads up a center devoted to autism, has changed her mind about the epidemic. She is quoted in an article in the Pittsburgh Post Gazette, "I used to think there were more cases [than in past years], but I don't think so any more." She is now convinced that the higher numbers are "not an increase in the number of cases, but are an improvement in recognition." (Is she kidding? I'm thinking of inviting her over for dinner so she can see the epidemic in action.)
Poof! Thanks to her words, the worry over autism has disappeared like Bruce Willis' hair. Whoopee! She also had the gall to say that autism used to be diagnosed as schizophrenia and that accounts for some of the diagnostic substitution. Oh? I wish I'd known so I could have named my girls Sybil, Sybil and Sybil.
Dr. Minshew happens to be on the Autism Speaks' Scientific Advisory Board. Autism Speaks was founded by Bob and Suzanne Wright in response to the crisis in rising autism numbers. Suddenly one of their top scientists says there is no crisis. Boy, autism sure looks like a crisis in my house. And at my kids' schools, where there are entire classrooms devoted to teaching kids on the spectrum. And at Barnes and Noble where books pop up like zits on prom night about all things autism.
Please tell me why our doctors and national institutions and even charities have abandoned children with autism, instead of setting out to conquer this neurological crippler. What if autism were contagious? Would our kids matter then?
Kim Stagliano Rossi is Managing Editor of AgeofAutism.com, a writer and the mother of three daughters with autism. She lives in CT with her husband Mark and the girls. She blogs at KimStagliano.