The IACC staff presented the results of scientific workshops, which have developed 41 research initiatives. I had come to this meeting expecting to hear the reports of scientists disconnected from real life with autism. Instead, I learned that many of the committee members, public and Federal, are parents of persons with autism themselves. As a result, the research initiatives will be addressed in a framework of six questions that a parent would ask as they deal with autism in their family:
When should I be concerned about my child’s development?
How can I understand what is happening to my child?
Why did this happen?
Which treatments will help my child?
Where should I turn for services?
What does the future hold?
While this framework is parent-oriented the committee noted the need to include adult individuals on the spectrum. Services for adults were a high priority topic all day, giving me hope that when my 6- and 8-year olds need those services they may be more widely available than they are today.
The sobering part of day came when the committee turned to the Strategic Plan itself. Like many people, I had thought the Plan was about how to spend the much-reported $900 million authorized over 5 years by the Combating Autism Act. At the 2007 Penn State Autism Conference, Duane Alexander, director of the National Institute for Child Health and Human Development had stated the Act would double NIH spending on autism research. That was exciting news.
However, IACC staff said that the Act actually does not approve ANY new money, since the current projects in NIH and elsewhere already spend that much. The representative from Autism Speaks disputed this, but NIMH Director Thomas Insel stated an upcoming inventory of projects would prove it. The Plan will guide how NIH targets money when current projects expire and current funds are available for the next year. So the effect of the Combating Autism Act is only that Federal government targets spending more wisely. Since the government is not actually doing more, let’s hope the IACC can guide them to do it better.
