Fear Mongering and Profiteering, Amplified

[caption id="attachment_884" align="alignleft" width="220"] Jenny McCarthy speaking at the 2008 Ante Up For Autism benefit[/caption]

Giving Jenny McCarthy a platform to peddle her predatory, profit-seeking, and fear mongering thoughts about autism and parenting is nothing less than irresponsible, if not negligent. I believe in free speech and I respect her right to share her ideas. However, McCarthy's views are based on discredited science and prey on the hopes and pick the pocket of parents of children with special needs. Allowing her to co-host the The View alongside respected journalists including Barbara Walters provides a platform that both legitimizes and amplifies McCarthy's fear mongering messages about vaccinations and autism. I see inviting McCarthy to co-host The View, akin to giving her a her a megaphone to yell "fire" in front of a crowded movie theater.

I have spent the last three years trying to find answers to the following questions:

• Is there something wrong with Caroline. Yes


• What is wrong with Caroline. Not such a a clear cut answer exists, options include: autism, failure to thrive, severe reflux, severe global development delay, ADHD, sensory processing disorder, mixed expressive language disorder, motor coordination disorder, and an array of other little unexplained medical issues.


• What caused Caroline's symptoms? There is no answer, readily available; however, scientifically backed research suggests children with Caroline's diagnoses benefit from intense therapy. So instead of wasting time looking for answers that might not exist and do not benefit Caroline, John and I focus on treatment options that will improve Caroline's quality of life. Perhaps it is best for us to not know why Caroline is autistic--I don't ask why, every time something good happens--so it follows that I should not ask why every time life presents a challenge.

Knowing that there was something wrong with Caroline's development coupled with regular medical complications was emotional and taxing. I am not going to lie. I cried, I was angry, I was mean, and I battle(d) depression and guilt. I did not want to raise a child with special needs. And there was a time that I mourned for the "normal" child I thought I would have--but I am getting to place where I realize that Caroline would not be the same person absent her diagnosis (the associated challenges, help shape her personality).

At every doctor appointment until May of this year, I would ask: is this a delay or a disability. I also went a tireless search for a diagnosis so we could provide Caroline with the appropriate support to aid her development. I cannot tell you how many doctors said something along the lines of, "There is something definitely wrong but we don't know what. Right now, the best thing to do is treat the symptoms." I have had doctors tell me that we should reduce tube feedings because Caroline may become too heavy to carry, suggesting that she would never walk. I have also had doctors tell me that we need to plan for Caroline's care after we pass away. These were not easy discussions for me or for the doctor. Some of the doctors were wrong but some of them were offering me much needed perspective and advice.

No two autistic children are the same - that is why it called ASD or Autism Spectrum Disorder, because there is a spectrum of variation. However, there are two main categories 1.) children who are delayed from birth or 2.) children who are developing normally and then around 18 months begin to regress. It is parents of kids in the second category who are more likely to attribute their child's autism to vaccinations. I have read article, after article discrediting the fraudulent and misleading study that planted this venomous seed in the minds of many parents who just wanted to know why-or have a direction to point their anger, frustration, and grief . Below is a excerpt from one such article:

"The venerable British medical journal The Lancet has retracted a 1998 study suggesting a link between autism and childhood vaccination with the measles-mumps-rubella MMR vaccine.

The Lancet tells WebMD that it has retracted "10 or 15" studies in its 186-year history. The retraction follows the finding of the U.K. General Medical Council (GMC) that says study leader Andrew Wakefield, MD, and two colleagues acted "dishonestly" and "irresponsibly" in conducting their research.

The Lancet specifically refers to claims made in the paper that the 12 children in the study were consecutive patients that appeared for treatment, when the GMC found that several had been selected especially for the study. The paper also claimed that the study was approved by the appropriate ethics committee, when the GMC found it had not been.

"We fully retract this paper from the published record," The Lancet editors say in a news release.

The retraction means the study will no longer be considered an official part of the scientific literature.

Jenny McCarthy is worth an estimated $14 million not counting the $50 million trust, Jim Carey established for her and her son, or her future earnings as a co-host of The View. McCarthy has the means to provide for her son's special needs-whatever they may be-whatever the cause may be. Many parents are not so fortunate and their limited resources and/or inability to cope with their child's diagnosis pushes them to to look for easy answers. There are no easy answers with autism. Every penny that is used to peddle, McCarthy's unsupported claims about how she "cured" her son of autism is robbing money from research about how to better understand and manage autism.

The cost of raising a child on the spectrum is astronomical. A Harvard study places the cost of caring for an autistic person over his or her lifetime at $3 million. Families shoulder much of that burden, and the limited assistance offered by government programs is constantly in jeopardy. But the first thing most parents do after hearing the words, "Your child is autistic," is seek information. I cannot tell you how many books and articles I have read about autism since May. Many families, even those who are well off, have trouble making ends meet. Costs of raising an autistic child include: extra medical costs, therapies not covered by insurance, adaptive equipment, extra caregiving expenses and so on. The biggest commonality among parents of autistic children is that they want to provide their kids with the best possible life. To do so, many turn into veracious information seekers and the misinformation peddled by McCarthy detracts parents from focusing on scientifically backed treatment options. There is a lot we don't know about autism but we do know that study conduct by Andrew Wakefield, MD was at best misleading and it is time to move the conversation forward. No one is still claiming the world is flat.

McCarthy's misinformation impacts the nature of the discussion about autism from how do we treat and manage autism to what causes autism.

In my opinion, it is irresponsible to give Jenny McCarthy a platform of this magnitude to peddle her unsubstantiated thoughts on autism. I invite your thoughts on the subject.