David Perry: Only Hillary Clinton has set forth a detailed plan so far; advocates are watching to see who else does
He says the view of autism has changed dramatically since 2008
Editor’s Note: David M. Perry is an associate professor of history at Dominican University in Illinois. He writes regularly at his blog: How Did We Get Into This Mess? Follow him on Twitter. The opinions expressed in this commentary are solely those of the author.
On Tuesday, Hillary Clinton released the most detailed policy document on autism in U.S. presidential election history.
While other candidates have spoken about autism from time to time, both in this election cycle and in previous years, we’ve never seen anything so informed and friendly to the autistic community. Her “Plan to Support Children, Youth, and Adults Living with Autism and their Families” is notable for its focus on adults and for the complete absence of stigmatizing words such as “cure” or “epidemic.”
The rhetoric is good, the policy is better, and the problems with the document (and there are some) are relatively few.
As Sara Luterman, editor of NOS Magazine and an autistic activist told me, “If even half of the things on Hillary Clinton’s plan happen, I’d be extremely pleased.” The best of Clinton’s ideas would lead to tangible improvements in job opportunities, education and the inclusion of neurodiverse people living in a society that too often discriminates against them.
Moreover, the politics of this announcement ought to serve Clinton well. Millions of autistic people and their caregivers, not to mention allies in other branches of the disability community, are witnessing a sustained, thoughtful commitment to their rights, services and supports. That’s almost never happened before.
Candidates need to step up
Which begs the question: Where are the other candidates on these issues? So far, commitment to disability issues of any kind has been mostly an afterthought for the other major candidates.
Clinton developed her plan in consultation with major autistic rights groups.
I spoke to Ari Ne’eman, president of the Autistic Self Advocacy Network, and C.J. Volpe, chief of media strategy for Autism Speaks. Both organizations, among others, were consulted by the campaign. These organizations often disagree, but both were relatively pleased with the plan. That’s impressive, as it’s a tricky needle to thread. Moreover, the organizations stand ready to consult with any other candidate needing advice on these issues.
The research that went into the plan shows in its sophisticated language. As Dr. Emily Willingham writes at Forbes, even a few years ago such a plan would have been packed with “cure” language, calling autism an epidemic, and focusing only on children and their parents.
Although the document released in 2008 by then-candidate Barack Obama’s disability policy committee, the only committee of its sort in presidential history, is excellent overall, its autism language reflects the norms at the time. It focuses on causes and treatments, not supports. When Clinton spoke about autism in ‘08, Willingham notes, she talked about epidemics and cures. Clinton has come a long way. She’s listening to the community.
Thanks to the power of the neurodiversity movement and self-advocates (disabled people speaking on their own behalf) forcing their way into the public attention, we think about autism and related conditions very differently than the candidates did in ‘08.
A different model of autism
The social model of disability teaches us that the challenges faced by autistic people do not emerge from flaws in the autistic person themselves, but from a society that is ill-equipped to provide the supports that autistic people need. The best parts of Clinton’s plan addresses such needs, focusing on jobs, education and expanding health care access.
Clinton’s plan also emphasizes adults. We still have no idea how many adults have autism, whether undiagnosed or, even worse, misdiagnosed and poorly treated.
This “missing generation,” as Jessica Wright called it, not only struggles without the supports they need, but the undercounting lends credence to the fearmongering about an epidemic of autism today. Yes, rates are higher now, but that’s because we’re better at counting. Clinton’s plan seems to get that distinction.
To be sure, the plan is not perfect. Amy Sequenzia, an autistic activist, raised concerns about Clinton’s support for the genomic research program into the genetic makeup of autism, known unfortunately as MSSNG.
First of all, she and many others have said, autistic people are not “missing.” Secondly, she wrote, “MSSNG, and any type of research under the guise of “mapping” the genetics of autism, is that the likely outcome is to prevent births of autistic people – as in selective abortion. Autism is not a disease, a brain cannot be prevented, and the research money could be better used to find better ways for all neurodivergent people to participate in all things.”
Sequenzia’s concerns are widely shared among autistic activists and their allies. Even those who would be interested in the research just to know are concerned about the eugenic purposes to which such knowledge might be put.
Sequenzia is also concerned about the phrase “behavioral supports” as indicating a plan to increase financial backing for Applied Behavior Analysis therapy (ABA), which many autistics consider abusive and unhelpful.
Julia Bascom, deputy executive director of ASAN, is less worried about ABA. She actually sees the plan’s emphasis on diverse autism services as pushing the boundaries of what insurance companies cover. She told me, “The language she uses is specifically language we are starting to see used to advocate for a variety of options beyond ABA to be offered.”
Bascom said that Clinton’s plan would better fund services such as speech therapy, occupational therapy, physical therapy and developmental therapies such as “floor time.” “It definitely includes ABA,” Bascom said, “But, unlike the way most autism insurance mandates are interpreted now, (Clinton’s plan) covers other things as well.”
These are details that, if Clinton is elected, need to be discussed before any policy changes go into effect. But what if Clinton isn’t elected? What do other candidates think about these issues? For the most part, we just don’t know.
I know many disabled Republicans, including plenty of autistic people. None of them plans to vote for Hillary Clinton. But they are going to vote, and the Republican candidate who takes a stand on their issues is likely to get their attention. So far, the most prominent statement they’ve heard on autism from a GOP candidate was when Donald Trump propagated the fraudulent link between vaccines and the condition.
That said, the Clinton plan may be a sign that disability is finally emerging as an important campaign topic. In July, RespectAbility, a nonprofit focused on empowering people with disabilities, launched a regular column on disability and the campaign, lamenting the relative lack of discussion of these issues.
Last week, Lauren Appelbaum, RespectAbility’s communications director, wrote, “What is most remarkable is that Clinton is just one of numerous presidential candidates to be discussing disability issues. In comparison, during the 2012 cycle, the word “disability” was very rarely even uttered. Former Florida Gov. Jeb Bush has been talking about autism since his announcement video. Ohio Gov. John Kasich often gets emotional when talking about the subject.”
She’s right about the emotion, but I want see more documents like Clinton’s plan.
Heartwarming stories and general statements of support for the rights of disabled people to have jobs, for example, are nice. Policy is what changes the realities. Obama had a disability policy advisory committee in 2008. No candidate, to my knowledge, including Clinton, has a similar group in 2016.
There are around 57 million Americans with disabilities. There are tens of millions of people like me, who are not disabled but are directly connected to disability in some way. My 9-year-old son has Down syndrome. Research shows that disability issues strongly inform our voting decisions. Clinton has now made a major play for our votes.
Whether you like the details of Clinton’s plan or not, she has now set a new floor for what a presidential candidate can be expected to do. The others need to step up. If, that is, they want to win.