In The Politics of Autism, I write:
Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.
About half a million people on the autism spectrum will legally become adults over the next decade, a swelling tide for which the country is unprepared. When they turn 21, these people leave behind all the programming and funding they received under the Individuals With Disabilities Education Act and enter a labyrinth of government services that vary wildly from state to state. Although people with other disabilities face similar problems, the staggering rise in diagnoses of autism creates a distinctly troubling dilemma in how to ensure that these people receive proper care.Uncertainty is a major theme of The Politics of Autism. In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about.Remnick writes:
What happens when people with autism age into adulthood remains understudied. Researchers predominantly focus on early intervention—less than 2 percent of all autism funding is directed to the experience of adulthood and aging—even though people with autism spend a vastly greater proportion of their life as adults. The existing findings are dismaying. About half of adults with autism continue to grapple with aggressive, self-injurious behaviors as they get older, and about half are also unemployed—the lowest employment rate among disability groups. Especially for those with greater challenges, it is more difficult to attain the basics necessary to live a comfortable life: housing, job training, and social opportunities.Inequality and complexity are also major themes of The Politics of Autism.
In general, adults with disabilities are eligible for resources through Medicaid, Supplemental Security Income, and various state disability agencies. These funds are meant to be combined and configured to fit the needs and priorities of each person, going toward everything from employment opportunities and day services to long-term care. But in reality, all the layers of bureaucracy often seem to tangle together for families. Individuals have to be certified separately by a variety of different agencies, all of which require their own documentation and have their own criteria for approval. Safeguards intended to protect adults with disabilities from being exploited often stymie parents and cost them money they simply do not have.
“There’s not enough funding in the first place, but even so, a ton of money is left on the table because this system is just so difficult to navigate,” says [Julie Lounds] Taylor, the Vanderbilt professor. “It’s nearly impossible for full-time professionals with a great deal of resources. I can’t even imagine what it must be like for families who are less well resourced.”