With Autism Awareness Month drawing to a close, this week we take a look at the state of public funding for autism in the U.S. In addition, we look at the largest genetic study of autism that’s about to kick off and the effects of emotions on one man with autism.
First up, as we noted in our wrap-up on Autism Awareness Month last year, this time of the year often leads to some introspection amongst autism advocates regarding what charities and public funding should focus on, often arguing in favor of services that impact the daily life of people with autism over research seeking to cure the condition. A new report is showing just how real this issue is as autism funding in 2011 and 2012 was heavily tilted toward researching the underlying biology and risk factors contributing to autism, and away from ways to help actual autistic people. A total 7% went to researching services for individuals with autism and only 1% went towards adults with autism.
The government and foundations spent about $300 million on autism research in 2011, and $332 million in 2012, with about 78 percent coming from the federal government and the rest from private foundations. Just 30 percent — $100 million — went to biology in 2012, and another 17 percent to understanding risk factors. And the current realities appear to confirm these trends with research into biology greatly increasing in terms of funding while funding actual services fell way behind.
In terms of research that is getting funded, and quite well at that, the Simon Foundation Autism Research Initiative (SFARI) has announced it will undertake the largest study of autism in the U.S. ever done. Known as SPARK (Simons Foundation Powering Autism Research for Knowledge), the project aims to collect DNA and other information from 50,000 people with autism and their families to give researchers a better understanding of the disorder.
According to Joseph Piven, this new initiative could be used to “guide targeted treatment research based on a patient’s genetic analysis.” Study leader Wendy Chung went on to state: “SPARK will help researchers make new discoveries that will ultimately lead to the development of new supports and treatments to improve the lives of people living with challenges.” By collecting DNA from saliva samples of participants with autism as well as their family members, each will be screened for genetic markers of autism. While at least 50 genes have already been linked to the condition, there is believed to be as many as 300 that play a role in its development.
Finally, in an engrossing interview aired on Fresh Air recently, an adult man with autism named John Elder Robinson came on to speak at length about the role of emotion in someone with autism’s life. As he recounted, all throughout his life, people have said, “There’s this emotional language you’re missing. There are stories in people’s eyes. There are messages.”
While Robinson did not know what these messages meant for a long time, this all changed when he received transcranial magnetic stimulation, which is non-invasive. Neurologist Alvaro Pascual-Leone, who treated Robison, explains TMS as a “tool that allows us to introduce a small amount of current into specific parts of the brain without having to use surgery to do so. … By introducing current in it, we can probe the function of certain parts of the brain [and] we can even modify how different parts of the brain work.”