In a win for self-advocates, lawmakers said this week that they will no longer seek to include the term “combating” in the title of the nation’s primary autism legislation.
A bill to reauthorize hundreds of millions of dollars in federal spending for prevalence tracking, research, early identification efforts and other autism initiatives will move forward under a new name — the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES.
The new name emerged earlier this week in a U.S. Senate proposal to renew the law previously known as the Combating Autism Act. A committee in the U.S. House of Representatives quickly followed suit by attaching the new title to its version of the bill and voting to move the measure on for consideration by the full House.
The change comes as efforts intensify to approve a reauthorization of the autism law. Originally passed in 2006, the measure is set to expire at the end of September unless Congress acts, putting big money on the line.
Currently, the measure ensures $231 million in federal autism funding annually and lawmakers are considering upping that amount as they look to renew the bill this year.
The title of the legislation, however, has exemplified a rift within the autism community for years. Long championed by Autism Speaks, self-advocates argued that including the term “combating” in the name of the federal government’s chief vehicle for supporting autism programs and initiatives sent the wrong message.
“It was a sign that Congress and many of the autism advocacy organizations that argued in favor of that rhetoric within the legislation lacked any respect for the views of autistic adults,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, which peppered lawmakers with thousands of messages in recent months urging a name change. “Autistic people and a growing number of our families do not see ourselves as something to be combated.”
That pressure appears to have won over key lawmakers, with an aide to Sen. Robert Menendez, D-N.J., the bill’s chief Senate sponsor, telling Disability Scoop that updating the name will “more accurately reflect the nature of the programs without alienating the very people the programs serve.”
Meanwhile, officials with Autism Speaks say they will support the renamed bill.
“As one of 36 major national disabilities organizations supporting the current reauthorization effort, Autism Speaks supports the amended legislation, including the new name for the bill. We want the most effective law possible that can address this urgent crisis,” said Stuart Spielman, the group’s senior policy adviser and counsel.