With the nation’s primary autism legislation set to expire soon, some disability advocates are pressing for major changes in the federal government’s approach to the developmental disorder.

In a letter this week to key members of Congress, 18 national organizations are asking for a greater emphasis on services and the needs of adults with autism when lawmakers reauthorize legislation known as the Combating Autism Act.

“Congress should make common-sense changes that will ensure that federal funds are better used to benefit the community that this legislation is designed to serve,” wrote the Autistic Self Advocacy Network, the Autism Society of America, the American Association of People with Disabilities, TASH, the National Disability Rights Network and other groups in the letter.

Currently, the Combating Autism Act allots $231 million annually for a wide range of autism initiatives including research, prevalence tracking, education, early identification and intervention programs. But that money is set to run out at the end of September unless Congress acts to renew the legislation.

In their letter to the law’s primary backers — U.S. Sen. Robert Menendez, D-N.J., Rep. Chris Smith, R-N.J., and Rep. Mike Doyle, D-Pa. — the advocacy groups said they’d like to see funding from the law reallocated. At present, a significant chunk goes toward underwriting research through the National Institutes of Health of which only 2.4 percent is spent on researching services for autism and even less — 1.5 percent — funds projects focused on adults with the developmental disorder, they indicated.

The groups also said they’d like the law renamed to remove the negative connotation they see in the word “combating” and want to see changes at the Interagency Autism Coordinating Committee, a federal advisory panel comprised of government officials and members of the autism community. Specifically, in the letter advocates told lawmakers that the IACC should include greater representation from people with autism and the committee ought to be reorganized to address more than medical research.

“Autistic people do not like being excluded from a conversation that at the end of the day is about us,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. “(The Combating Autism Act) really needs to be about supporting autistic people.”

Stuart Spielman of Autism Speaks, which has long-championed the bill in its current form, acknowledged that there is more work to be done, citing areas like transition and employment that merit greater attention, but insisted that all components of the current law are “vital.”

“We want to build on the successes of the Combating Autism Act,” said Spielman, the group’s senior policy advisor and counsel. “There’s a lot more that needs to be done but if you look at where things were at years ago, we have made progress.”

Menendez, who has traditionally been the measure’s chief Senate sponsor, is open to some reforms of the legislation which originated in 2006 but given that this is a reauthorization of an existing law, there are limits to how much change is realistic, an aide to the senator told Disability Scoop.

Lawmakers are looking to introduce a proposal for reauthorization in the coming weeks and are aiming for approval by August, the aide said.

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.