October 29, 2006

Autism Mom Discusses TV Researcher

Defending the Indefensible

Dr. Mike Waldman is responding as defensively as a child caught in a huge lie or stealing from his local drug store. He would rather defend his indefensible lunacy and junk science than admit to his huge error in judgment and reason. He is now caught up in a huge firestorm that even he probably had no idea he was getting into, by proposing his ignorant hypothesis. He now seems incapable of the wherewithal or common sense to simply extricate himself.

But Waldman may have made the most damaging statement to date when he said, "PARENTS SHOULDN'T BE DECIDING THE DIRECTION OF RESEARCH". Again Waldman demonstrates his ignorance of an issue that he came in on too late, too uninformed, too naive to even be a participant in the debate.

He is unaware that many of the most active parents in this debate ARE doctors and scientists. He also seems unaware as he jumps in at the 11th hour and decides to dictate what and how this epidemic isstudied, that if it wasn't for parents no research at all would have been done, besides the easily flawed epidemiological studies released and paid for by the CDC, clearing themselves as the poisoners of an entire generation of children. How dare Waldman come along after nearly two decades of our children being written off, neglected, denied they even existed, dropped by insurance companies or refused payments for autism treatments, miss-handled by ill-prepared school systems and early intervention and neglected by their own governments at every level. Parents are the only ones that have given a damn about these kids for more than 20 years. Parents have mortgaged their lives to try to afford the most promising treatments and therapies that might make a difference in their child's outcome because no one else is offering a thing. They have single-handedly raised the public awareness to a national crisis and epidemic. Parents alone have driven the train of research, political action, support groups, legislative action,insurance reform, biomedical treatment organizations nationwide that are recovering children from this devastating disease.

So all you parents that have dedicated your life to Autism, your own child as well as all others and those children yet to come, just back off now because Mr. TV Man is here, and all the answers will be forthcoming. Stop your fundraising efforts, stop your boards that are distributing research funds for real scientific studies, stop your political action committees, stop your parent support groups, stop your biomedical conventions, stop your dialogue with real doctors and scientists and sit back in your easy chair at home because, Mr. TV Man is here, Economics professor extraordinaire, newly professed expert on Autism is now going to dictate to parents,
doctors, scientists, the nation, on how the Autism research and debate should be conducted. He alone will tell us what is valid research and who has a right to participate? He will decide who should be taken seriously and who should not. "Never Fear, Mr. TV Man is Here".

Mr. Waldman, you are not going to dictate to parents. Parents are Autism. Parents are the only support these children have. Parents are the funders of research, they are the soldiers of Autism legislation and insurance reform, they are the educators of their own children, the legal experts on IDEA and FAPE, they are their children's nutritionists, doctors, nurses, educators, and most of all they are their children's advocates in a world that is more and more hostile to not only our children but to us too. You, Mr. TV Man have crossed a line that is unforgivable. You dare to dictate
to and exclude parents from a process that they have carried alone. We will dictate research because we are the only ones funding it and soliciting the research. You come along with your bizarre precipitation/cable TV/Autism theory and suddenly feel you have the right to exclude the only people who have given a damn about our kids from day one.

Parents are deciding the direction of research because few listen to the only people that know these children inside and out. We witnessed our children's decline and we had to take it into our own hands to have our concerns taken seriously. All the experts have told too many of us to institutionalize our children, that they would never talk, that they are severely mentally retarded, there are no treatments, there is no hope. Yet on our own, with the help of sympathetic and compassionate researchers, doctors, and professional that truly listen to parents, many of us across the nation have fixed our children's problems. Experts ignored our children's' serious medical problems as if because they had Autism it was ok that they suffer from severe intestinal, immune system, and gut disorders. We fixed those problems too. We have attacked Autism from multiple levels and approaches and our children are recovering. We can thank ourselves for that gift. What are you offering Mr. TV Man? I never owned a TV, it didn't cause my child's autism.

That is the problem. Mr. TV Man may be published in medical journals eager to highlight anything that takes the focus off of vaccines. But he will never ever gain the support of dedicated and educated parents who are the driving force behind all things Autism. And we have that right, because medicine, government, insurance, educational institutions, old-style non-profits, all told us long ago that we don't matter, our children don't matter, they are expendable, to be institutionalized and forgotten. Out of love for our children we have changed all that and continue to burst open-wide the doors that hold the mysteries to our children's problems.

Mr. TV Man seems unaware of how savvy these parents are and educated on the complex and intricate issues of Autism, far more educated on this very issue than him. The whole issue seems too simple to him, he does not even realize the level of scientific sophistication that parents have had to reach to treat and cure their own children. It is Mr. TV Man who has no right to jump in and start dictating the Autism research agenda in a blathering attempt to defend the indefensible. The research and studies have gone so far beyond his simplistic thinking that he seems incapable of even comprehending the complexity of it. The most brazen part of this man's ego is how he came to the conclusion that as an Economist and professor, he is in a position to hold himself above parents. But we too are researchers, doctors, lawyers, statistical experts, psychologists, teachers, professor, politicians, etc.

Mr. Waldman still refuses to address the medical issues of Autistic children and how TV might bring about changes in the immune system and biochemistry of these kids. It's better to ignore what could not possibly fit into his simplistic and unproveable theory.

As he digs his grave of ignorance deeper and deeper I suspect his attacks on parents will only grow more vitriolic, more desperate, as he tries to hang on to his newfound fame and the attention that it is bringing him. In the mean time the real research will continue, funded by parents, and the organizations founded and run by
parents. And we will continue to be the only ones that are serious about getting to the root of this epidemic and the cause of our own precious children's decline into this devastating disease as well as their recovery from it. Mr. TV Man is not adding anything substantive or beneficial to the debate or to real science and he should step out gracefully now before causing further embarrassment to himself and the once prestigious institution of Cornell University, however neither of these seem to be of great concern to him.

Kendra Pettengill

1 comment:

kristina said...

Pettengill's response was well done. I emailed Michael Waldman and noted some of his response here on Autism Vox.