A Primer on The U.S. Government's Autism Activities

The Government Accountability Office has just come out with a report that provides a good overview of the federal government's activities over the past six years for people with autism spectrum disorders. You can find the 50-page report online here.

The report with the not-so-enticing title ("Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges") focuses on activities at the National Institutes of Health, which sponsors research, and the Centers for Disease Control and Prevention, which studies how widespread autism spectrum disorders are. The report outlines the government's work to identify the scope of the autism problem, to understand its causes and identify treatments and existing programs to help people with the disorder.

This report, sought by Senate Majority Leader Bill Frist, would be a good study to read if you plan to write Congress or President Bush about the Combating Autism Act now pending in the House. (For background on that issue, see this post.) Selected highlights include:

• Information about spending on autism research. Starting from a very small base, the National Institutes of Health has increased funding, from $51.5 million in 2000 to $101.6 million in 2005.

• Where federal research money goes. In addition to government agency research efforts at the National Institute of Environmental Health Sciences, and the National Institute of Mental health, the report identifies 9 centers of research excellence at academic institutions around the country (see page 9), and eight more academic institutions where research on treatment takes place (see page 10). Other efforts include scientific inquiries into genetic causes for autism.

• Why the U.S. has had trouble organizing autism-related efforts so far. The reason is that, according to the GAO, "no federal agency perceives itself as having lead responsibility for addressing the service needs of adults with autism or services for children beyond education." And while there's a group called the Interagency Autism Coordinating Committee set up to quarterback the government's autism efforts, it lacks the clout to set clear direction for the nation and states, the GAO points out. (See page 4.)

• Why the CDC has lost momentum in tracking the growing U.S. autism population. The reason, according to lawyers for the CDC, is that new federal privacy laws require parents to sign consent forms if they want to share private medical data about their kids' diagnoses. Because the government bureaucrats don't want to go through the effort to ask parents to consent, not all the information about kids with autism diagnoses is getting to the government researchers counting this population. The GAO scolds the agency and the Department of Education for not solving this problem.

There are other facts and stats in there that you will find important. If you care about what the government is doing, or not doing, to help Americans with autism, at least take a look at the highlights page and the table of contents.