No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.
Jerry Carino at The Asbury Park Press:
One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.
Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder.
“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”
On Thursday, as Congress sent the Autism CARES Act to Trump, Smith thought of the Gallaghers, whose two toddlers Alana and Austin are now adults in their 20s. The family's push back in 1997 helped lead to the enactment of Smith's first bill on the issue — the Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which opened the door for comprehensive federal funding.
“There was very little research going on and the Gallaghers were desperate for help,” Smith said. “The CDC didn’t want my first bill. Now they’re more than happy to talk about it.”