Platform of the Autism Party

By John Gilmore

It’s time to start thinking seriously about who is going to be the next president. Even though we still have almost a year before the general election, there is barely a month until the whole thing kicks off with the Iowa caucuses, and the candidates of both major parties will probably be decided five weeks later on February 5th when 20 states hold their primaries.

Most of us come to the election with some type of allegiance as a Democrat, Republican or independent. I frequently read intense online arguments between people in the autism community that the Republicans did this or the Democrats will do that.

We as a nation are facing huge issues: this endless war and the tremendous number of lives lost and amount of money spent pursuing it, the ongoing decline of the quality of healthcare and the accompanying skyrocketing costs, environmental degradation and on and on. I am almost 50, and I have been a political junkie all my life. I worked on my first political campaign in 1972 when the overwhelming issue was how to end the war in Vietnam. I don’t think there has ever been a more important election than this one in my lifetime.

As a parent of a child with autism I cannot afford the easy choice of defaulting to party allegiances. We are no longer Democrats or Republicans. We are now, whether we want to be or not, members of the Autism Party because everything about autism is political. How it is defined? How it is diagnosed? How it is treated? Who is allowed to treat it? Whose opinion counts? Who is ignored? Where do the negligible research dollars go? What is paid for and by whom?

All of these crucial questions have enormous impact on our families’ day-to-day lives and are key to our children’s futures, and all of them are political issues. Any parent who is serious about providing the best possible life for their child with autism must be engaged in the issues and the political process to the extent that the daily demands of our lives allow.

Right now the presidential election is wide open; the leaders in the polls today very well could be distant memories by March. None of the candidates have much of a track record on autism issues. Most of them probably don’t have positions on the issues that are most important to our kids. As much as two or three percent of Americans are directly related to someone who has autism, and the last two presidential elections were decided by less than 2 percent of the vote. An astute candidate would realize that an organized, vocal autism voting bloc should not be ignored.

Several organizations in the past have prepared candidates questionnaires to compel presidential wannabes to at least have a staffer think about our issues and commit something to paper. It provides us with leverage later on if they get elected, and provides a way to mobilize our community to get the candidates attention. A-CHAMP has already begun an email campaign to get candidates to respond to a questionnaire, and I am sure other questionnaires may be forthcoming from other organizations.

Here are a few questions I would like to ask the candidates:

Education. The federal government has never provided local schools districts with more than 40 percent of the money that is needed to meet federal special education mandates identified in the Individuals with Disabilities Education Act (IDEA). If schools in your district are inadequate, or if you are hearing more complaints about the cost of special education, this is a primary reason why. Overall, children with disabilities are short-changed by $28 billion per year. I would like to know exactly what each candidate intends to do to keep the broken educational promises to kids with disabilities.

Research Funding. The much ballyhooed Combating Autism Act is a year old and has yet to be funded. Even if it is fully funded, the total amount would be less than $200 million. That’s from an American economy of more than $13 trillion dollars, or about 66 cents for every resident of the United States. Two hundred million dollars is the annual payroll for the New York Yankees or about 4 months worth of Blackwater’s federal contracts. There are now more people with autism in the United States than people with HIV/AIDS, but we spend more than $3 billion on AIDS research even though we know the cause of AIDS and have highly effective treatments and prevention methods. Given the huge increase in the number of children with autism, even if the Combating Autism Act was fully funded, we would still be spending less per person diagnosed with autism than we were in 2001. I would like to know what the candidates think of current levels of spending on autism research and whether they think that we should be spending as much on autism research as we do on AIDS research.

Research Subjects. In addition to being insultingly stingy, the Combating Autism Act prohibits any research into the possible role of environmental factors and explicitly forbids research on any connection between vaccines and autism. Despite more than 10 years of genetic research failing to identify a single gene or combination of genes that has any predictive value in causing autism the Federal Government has decided that autism is a purely genetic disorder. I would like to know whether the candidates have also concluded that autism is a purely genetic disorder and whether they think we should continue to ignore the role of environmental factors and vaccines as possible causes of autism.

Insurance Coverage. A common experience of families dealing with autism is to have basic medical services denied insurance coverage because of a child’s autism diagnosis. It has happened to me repeatedly. Some families are dropped from plans completely once a family member gets an autism diagnosis. And other families are forced to bear the entire cost for behavioral interventions that we are told are the only therapies that are demonstrated to help our kids. The insurance companies take our money and provide nothing in return. Parents have been successful in some states, most recently Texas and South Carolina, to force some insurance companies to pay for treatments. But insurance companies are regulated by a complex web of state and federal laws. And federal reform is necessary to stop the discrimination.

I would like to know how and when the candidates will reform federal insurance laws to prohibit discrimination against people with autism and their families and cover necessary therapies.

Corruption and Incompetence at the CDC. Under Director Julie Gerberding, MD, MPH, The Centers for Disease Control and Prevention, America’s health watchdog has become an example of bureaucracy at its worst. Gross examples of waste and mismanagement have been revealed in an investigation by Sen. Tom Coburn, MD (R-Okla.). As was recently revealed in the press, policy statements from the CDC are vetted by the White House for political correctness regardless of what the science may indicate. Despite a tripling in the number of children with an autism diagnosis since 2001 the CDC still claims they can’t say if there is an epidemic or not because they simply refuse to do the epidemiology. The CDC “lost” the data sets for the one and only study done on the effect of thimerosal on autism. CDC is rife with conflicts of interest in regards to assuring the safety and efficacy of vaccines and maximizing the use of vaccines. It’s advisory boards are filled with people with direct financial ties to the firms they are supposed to regulate in the public interest. I would like to know what the candidates intend to do to clean up the mess at the CDC and restore confidence that the agency is doing honest research into the scope, causes and prevention of autism commensurate with the public health disaster we are dealing with.

If you would like to ask the candidates these questions too, A-CHAMP has an online tool at www.a-champ.org that makes it easy to send emails to all the campaign headquarters of every candidate running for president in the two major parties. The more people who participate the more likely it is that we will get action from candidates. We have nothing to lose except a few minutes time and potentially a great deal to gain.