(Editor’s Note: This story’s author is one of the many U.S. adults on the spectrum. While the number of children on the autism spectrum has been identified as 1 in 68 in the U.S., there has not been a comprehensive survey of adults on the spectrum.) Many in the autism community are optimistic about Hillary Clinton’s language in her policy proposals for autism, but they are waiting to see what happens if she is elected president. On Tuesday, the former secretary of State’s campaign rolled out a plan to support those on the autism spectrum, and held a conference call with Dr. Fred Volkmar, director of the Yale University Child Study Center; Sen. Bob Casey, D-Pa.; and Ari Ne’eman, president and co-founder of the Autistic Self-Advocacy Network.
Among the proposals were those that would improve access to services through private insurance, health insurance marketplaces in Obamacare and military insurance; increase state compliance for Medicaid coverage of autism services; conduct a national outreach campaign to boost screening and an awareness campaign; increase opportunities to help people on the autism spectrum transition into adulthood and find employment, and increase research into autism.
Karen Fessel, founder and executive director of the Autism Health Insurance Project, who has a son on the spectrum, was optimistic about the proposal, despite some gaps. “I hope she can do half of it,” she said. “A lot of it's already on the books. The programs are underfunded or there's no enforcement, so there's no penalty for following the law.”
Ne’eman said on the conference call that while as a non-profit his organization does not make endorsements, he was happy Clinton approached his team and consulted with people on the spectrum.
“The fact it was requested and the fact many of these priorities come directly from the community is extremely significant,” Ne’eman said.
Ne’eman also highlighted Clinton’s support of the Keeping All Students Safe Act, a piece of legislation that would prohibit the use of any mechanical or chemical restraints, such as being given drugs or being locked in handcuffs, as well as seclusion.
A statement from the Autism Women’s Network contained more mixed reaction, praising Clinton’s highlighting the disparities in diagnosis by gender and race, the banning of restraints and support for upholding a 1999 Supreme Court ruling that unjustified segregation of people with disabilities is considered discrimination. But the group raised concerns that her proposed Autism Works Initiative could entail sheltered workshops, which it opposes.
“AWN is cautious as it relates to any mention of genome research because these types of projects have a history of cure outcomes,” the statement said. “AWN wishes Secretary Clinton had gone farther to promote broader Medicaid coverage for adults instead of focusing on the coverage of children’s services.”
Sara Luterman, who has autism and is an advocate, and in her day job works as a program assistant at the Association of University Centers on Disability, spoke about how restraints and seclusion can hurt children on the spectrum.
“If a non-autistic child was tackled by multiple adults and/or locked alone in a windowless room, it'd be considered child abuse,” Luterman said in an email. “Since many autistic children have communication difficulties, oftentimes parents do not know that their children are being abused until it is too late.”
Luterman said that up until the announcement she was on the fence between supporting Clinton or her Democratic primary opponent, Sen. Bernard Sanders, I-Vt., but Clinton’s proposal made the difference. “If implemented, her policy proposals could greatly improve quality of life for autistic adults and children,” she said.
John Elder Robison, a scholar-in-residence at the College of William and Mary who wrote a memoir on his experiences on the spectrum, was slightly more skeptical. “I think it's more pandering to get votes most likely,” Robison said. “I would say, is there any evidence that she has any concern for autistic people in the past.”
In 2007, when she was a senator for New York, Clinton introduced the Expanding the Promise for Individuals with Autism Act. That same year as a candidate, she spoke at an autism event in Sioux City, Iowa.
Clinton’s language has changed over time. At that 2007 event, Clinton spoke frequently about “combating” autism. This was very much in line with the paradigm at the time, as the major legislation focusing on autism was the Combating Autism Act, signed in 2006.
However, since then, as understanding and acceptance of autism has evolved, the concept of “combating” autism has fallen out of favor. When the 2006 legislation was re-authorized in 2014, it was called the Autism CARES Act. Similarly, last week at a town hall in New Hampshire, Clinton talked about “supporting” people on the spectrum and their families.
“Improving support for children and adults on the autism spectrum and their families can vastly improve their lives,” her policy proposal said.
Lydia Brown, an advocate on the spectrum and a law student at Northeastern University, welcomed Clinton’s evolution. “I am glad to see she has evolved,” Brown said. “If you want us to be supporting you, then you should use supportive language.” However, while pleased with many of the policy proposals, what matters is what happens concretely if Clinton is elected, Brown said.