On Tuesday, Hillary Clinton's campaign revealed her plan for tackling autism. That in and of itself isn't huge news. Clinton has tons of plans: She's got a plan to cure Alzheimer's disease, a plan to crack down on campus sexual assault, a plan to reduce out-of-pocket health costs, and many, many more. But the nature of the plan is news. Some of the major elements of the plan include:
- Working through Medicaid and Obamacare exchange plans to increase autism screenings at 18 and 24 months
- Pushing states to require Obamacare plans to cover autism services, including physical therapy, occupational therapy, and services that teach skills for daily living to autistic children and adults; and having the Department of Health and Human Services aggressively monitor states to make sure their Medicaid plans are paying for these services too
- Passing the Keeping All Students Safe Act, which would ban mechanical and chemical restraints, as well as physical restraints that restrict breathing; only allow seclusion or restraint when there's an imminent risk of a student causing physical injury to herself or others; and otherwise limits coercive practices that are often used against autistic youth
- Requiring a post-graduation transition plan for every autistic student aging out of school services, and setting up a public-private partnership with hundreds of employers to give autistic young adults job opportunities
- Funding pilot programs to expand employment for autistic adults, funding community housing with support services for autistic youth and adults, and working with states to expand funding for caregivers
- Conducting the first study of the incidence of autism among adults
The major throughline in each element of the agenda is a desire to help autistic individuals: to make schools and workplaces more accessible for and understanding of them, to prevent them from being mistreated, to fund housing, caregiving, and other services they need.
Politicians' efforts on autism have historically focused on researching the condition's causes and ways to prevent it. It seems obvious that a presidential campaign's "autism plan" should focus on helping autistic people, but for years it hasn't been obvious. That the Democratic frontrunner's plan is about helping autistic people, rather than "curing" them or eliminating their condition, is actually quite a radical shift.
The problem with a "cure" obsession
It's helpful to contrast Clinton's agenda with that of the Combating Autism Act, which George W. Bush signed into law in 2006. The first problem with the act was its name, which implied that the goal of public policy should be to stamp out autism, rather than helping autists.
This is troublesome both because it does nothing for autistic people alive today, and because many on the autism spectrum (myself included) don't view autism as wholly negative and argue that society could benefit from acknowledging and celebrating neurodiversity. We don't want autism to be "combated"; we want autistic people to be supported. That means government policy that provides services that enable people on every point in the autism spectrum to learn, work, and find acceptance in their communities.
But the law was also troubling because of how some $945 million in federal spending authorized by the act was allocated. A 2013 report from the Government Accountability Office found that of 1,206 autism research projects funded by the federal government from 2008 to 2012 (after the Combating Autism Act was passed), a little under half focused on either the biology behind autism or on the condition's causes. By contrast, only 21 percent researched treatment and interventions.
What's more, an analysis by the Autism Self-Advocacy Network found that only about 1.5 percent of the National Institutes of Health's spending on autism research goes to the needs of autistic adults, and only 2.4 percent goes to improving services. Hillary Clinton was very much on board with this approach and language, and in the 2008 election cycle spoke of the need to face the "rising tide" of autism and bragged about co-sponsoring the Combating Autism Act.
There's nothing wrong with learning more about the biology of autism, and there's nothing wrong with trying to figure out how to treat or reverse its more debilitating effects (life self-harm) and co-morbid conditions (autists are at elevated risk of epilepsy, for example). But many autism advocates have argued that this funding would be better spent researching how to help autistic people alive now. That could bring more immediate, tangible benefits to people on the autism spectrum.
Clinton's new proposal is a step toward doing that. She focuses almost exclusively on improving treatment of and services for autistic people. She highlights autistic adults, who have traditionally been neglected in public policy discussions around autism. While she calls for an increase in research funding, she emphasizes that it must fund "a range of autism-related research," including "studies that improve the quality of patient services for people with autism" — not just biological research.
She also makes a point of calling on the Centers for Disease Control and Prevention to accurately measure the incidence of autism among adults, something that the UK has done but the US thus far has not.
In talking about treatment, the plan specifically mentions "behavioral and developmental interventions"; the including of "developmental" is meant to indicate that Clinton doesn't only want to cover applied behavioral analysis, a treatment that's highly controversial among autistic people. It suggests Clinton wants to support less divisive evidence-based behavioral interventions — like the "Play Project" model — as well as developmental support through things like occupational and speech therapy.
The construction and rollout of the plan is also illustrative. The announcement of the plan included a conference call in which Ari Ne'eman — head of the Autistic Self-Advocacy Network, a leading autism rights group — participated, and ASAN was also consulted as the package was being put together.
"This is a sign of how far the world of autism politics has come in the last ten years," Ne'eman writes in an email. "In 2006, Congress was passing a 'Combating Autism Act', focusing exclusively on causation and cure related research. Ten years later, one of the leading candidates for President has put forward an agenda that includes a heavy focus on services and adults. That's significant. Have we gotten everything that we wanted? Of course not. Is this light years ahead of where we were in the last campaign cycle? Clearly!"
- Eric Garcia at Roll Call has a great rundown of (mostly positive) reactions to Clinton's plan from other prominent members of the autistic community.
- National Journal's Ron Fournier has a good piece on how Clinton's managing tensions between opposing camps in the autism world.
- Autism advocate Sara Luterman: "Hillary Clinton's autism platform is transformational and empowering."
- For more on neurodiversity, see my interview last year with science journalist Steve Silberman.