November 29, 2012
Good afternoon Mr. Chairman and Members of the Committee. I am honored to be here today on behalf of the non-profit organization, SafeMinds, grateful to Chairman Issa for today’s invitation and humbled by the opportunity to represent the community of autism families.
(Slide 1) In addition to my comments, I have provided a more extensive report from SafeMinds and documents for the record.
(Slide 2) In 1935, a John Hopkins professor named Leo Kanner wrote the world’s first textbook on Child Psychiatry. In 527 pages and 43 chapters, Kanner described every psychiatric condition in children know to medicine at the time. There was no condition remotely resembling autism.
In 1938, Oliver and Mary Triplett left Mississippi with their five year old son Donald to visit Kanner, by then considered the world’s leading authority on children’s development. When Kanner met Donald he was fascinated. He had never seen a child like him.
In 1943, Kanner wrote a paper inspired by Donald. “Since 1938,” he wrote, “there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits-and, I hope, will eventually receive-a detailed consideration of its fascinating peculiarities.”
The oldest child of the eleven described was born in 1931. Kanner subsequently diagnosed hundreds of children with autism, but never found a case born before 1930. The historical record is clear: before 1930, the rate of autism was effectively zero.
(Slide 3) Today, nearly 70 years after Dr. Kanner’s paper, reported autism rates are 1 in 88 American children born in the year 2000. In some states, the rate is higher than 1 in 50.
(Slide 4) In New Jersey, 1 in 29 boys born in 2000 were diagnosed autistic.
What’s going on? Why are so many American children sick?
Let’s be clear. Autism is a public health crisis of historic proportions. Worse than poliomyelitis. It’s devastating a generation of children and their families. We need to face up to the reality. Autism is a national emergency.
(Slide 5) Here’s a summary of historical autism surveys in America. For a long time, reported U.S. autism rates were low, estimated at about 1 in 10,000. Then around 1990 something new and terrible happened to a generation of children. Autism rates didn’t just rise, they multiplied. This escalation occurred in both “full syndrome autism” and the broader autism spectrum, including Asperger’s syndrome.
Some observers have claimed this rise is not real. That numbers are going up because of “better diagnosing.” While it is true that we now diagnose autism with better tools, that doesn’t mean there is some “hidden horde” of overlooked autism cases. The old surveys didn’t just miss 99% of children with autism. Anyone who reads them will see the obvious: it’s clear the researchers were diligent in finding cases and confident that they found the vast majority of children. It’s horrible but true; reported rates of autism have risen simply because there are more cases of autism.
In the midst of this crisis, the federal agencies responsible for the health of our nation’s children have failed in their duty. CDC’s negligence has led the way. Many believe CDC has actively covered up the evidence surrounding autism’s environmental causes
NIH has received the lion’s share of Congressional funding, money they have wasted on status quo research and gene studies. It’s absurd to focus on genetic research in this crisis, there’s no such thing as a genetic epidemic.
(Slide 6) CDC first started investigating environmental causes in 1999 in Brick NJ. Their survey data showed that autism rates went from zero in 1989, to 1 in 128 four years later. But they used statistical tricks (and the fact that autism surveys miss many three and four years olds) to publish a finding that there was no increase.
(Slide 7) A CDC analyst also discovered in 1999 that higher levels of infant exposure to a mercury compound in vaccines increased autism risk more than tenfold relative to zero exposure. The analyst wrote about this result to his supervisors: “It just won’t go away,” he said. But he and his colleagues used more statistical tricks and published a finding that made the risk go away.
In the financial world, the result of the pressure to manipulate numbers to provide the answers bosses want has a name - securities fraud. In medicine there are similar pressures: they’re called special interest politics and peer review and what the CDC has given us is the medical equivalent of securities fraud. All to avoid the inconvenient reality of the autism epidemic.
In 2006, Congress gave the NIH a mission to “combat autism.” You authorized $850 million for that mission. Frustrating to most in the autism community, NIH spent most of that money on the great autism gene hunt while blackballing environmental researchers and defying parent concerns. It’s been a colossal waste of money and time. Not a single case of autism has been prevented. Not a single child received improved treatments. American families deserve better.
In 2011, autism parents asked Congress to fix the bill. We told you that when you spend that much money on the wrong things, you haven’t just wasted taxpayer dollars, you’ve compounded the problem by reinforcing the denial. Unfortunately, Senate leaders didn’t take the time they needed to fix the problems; they simply extended the old bill for three more years and the House went along rather than see nothing move forward.
(Slide 8) In the face of a national emergency, government agencies, especially CDC and NIH, have performed poorly and behaved badly. We need accountable, new leadership on autism at the NIH and the CDC. We need an advisory committee that believes in combating autism, not one newly stocked with appointees who oppose the mission, who want us to surrender to autism and oppose prevention and treatment research. We need a Combating Autism Act that truly combats autism. We need to stop investing in the autism gene hunt and identify what has changed in the environment that could have possibly injured so many children.
We need to conduct independent research into the great unmentionables, mercury and vaccines, connections that we’ve documented in the earliest cases. (I have provided to the Committee copies of my book, The Age of Autism which provides this history). These are the only environmental factors identified so far that are plausible causes for the magnitude and timing of this crisis.
Ultimately, we need to face and answer the question, why are so many American children sick? We will only do that hard work if agency leaders are held accountable to the American people, not powerful interests in the medical industry. So we’re asking you, the members of the Committee for your help.
The autism community owes a debt of gratitude to Congressman Burton for his dedication to these issues. We hope as he retires from Congress, that other members of this Committee and Congress will continue his good work in seeking the truth about autism.
Don’t make this hearing a one-time episode. Stay on the job in the next Congress. Root out the failures, the waste, the fraud and the abuse.
There’s a crisis and we need your help.
Thank you for your time.
SafeMinds Autism Report
SafeMinds Thorsen Report
EBCALA Paper Unanswered Questions