Almost 1 percent of 8-year-olds have been diagnosed with autism and related disorders, according to a new report from the Centers for Disease Control and Prevention. That number is not a huge surprise; the same figure was reported in another autism study in October. But it's not every day that the CDC labels a developmental disorder "an urgent public-health concern." Language like that could provide more momentum for much-needed research into the causes of autism and more funding to test and develop autism treatments. It's high time; parents seeking help for their children find many treatments and cures promoted but few that have been rigorously tested.
The increase in autism diagnoses could be a result of better understanding of the autism spectrum as distinct from other developmental disorders. The rise also could have something to do with the tendency of doctors, parents, and school districts to choose diagnoses where therapy and special education is more likely to be state-funded. That might also account for the big variations in autism diagnoses from state to state, with three times as many cases of autism reported in Arizona and Missouri as in Florida and Alabama. But "a true increase cannot be ruled out," Catherine Rice, a behavioral health scientist at the CDC's National Center on Birth Defects and Developmental Disabilities, said at a press conference this afternoon. Parents have been clamoring for more help from the big guns in medical research and pharma for years, but researchers used to look at autism not as a glamorous research topic but as a career-killer. That's slowly changing; in July, Pfizer, the world's largest pharmaceutical company, said it was going to work on developing autism treatments.
Parents seeking autism treatment face a bewildering array of choices, from chelation to hyperbaric oxygen chambers, none of which have been rigorously tested for safety and efficacy. Treatments touted earlier as cures have failed to measure up: one example is secretin, a hormone affecting liver and pancreas function that was popular until a 2003 trial found it did nothing to alleviate symptoms. And mainstream researchers have shied away from studying alternative treatments. Last year, the National Institutes of Health bailed on funding a study on the effectiveness of chelation therapy, saying it couldn't confirm that the practice is safe.
Parents have said loud and clear that they want more research now (if not yesterday) into the causes and treatment of autism. "It's about freaking time to get yourselves in gear," said one of the 290 people who filed public comments on what the federal government should do about autism research to the Interagency Autism Coordinating Committee earlier this year. "DO THE RIGHT THING!" wrote another. "Autism is rampant, and can't be caused by genetics alone. Don't waste more money on genetic research—start looking at the environmental triggers causing this horrific epidemic."
And I've copied this mom's comment in its entirety, because she cuts to the heart of how autism creates medical, emotional and economic challenges that threaten the survival of entire families:
"It is my opinion that the parents need more help. Many communities don't have enough support for the children and families. Many move to areas where more help is available which then puts stress on that community that may already be serving more children than they can afford. There should never be a waiting list, a waiting list is time lost for the child, and in a many cases it makes it impossible for the child to catch up or progress. I feel that immediately after your child receives this diagnosis every option should be readily available to them. I also believe that parents like myself should be offered some kind of mental health support or financial support as autism changes the entire life of the family. I am a single Mom raising a son with autism who is nonverbal well as a son with Asperger's. I have been financially and emotionally devastated and those are both difficult to overcome without appropriate help. We must study the affects this has on the parents and help them."
If 1 in 100 American children were diagnosed with cancer, I have no doubt that Congress and the White House would be scrambling to fund a Manhattan Project to investigate causes and develop new treatments. What does it take for the 1 in 100 children diagnosed with autism to get the same respect?