Uncertainty and complexity are major themes of The Politics of Autism.
Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country."
Steven M. Teles, “Kludgeocracy: The American Way of Policy,” New America Foundation, December 2012. Online: https://static.newamerica.org/attachments/4209-kludgeocracy-the-american-way-of-policy/Teles_Steven_Kludgeocracy_NAF_Dec2012.d8a805aa40e34bca9e2fecb018a3dcb0.pdf
Claudia Boyd-Barrett at California Health Report:
In California, parents who suspect their child has a developmental delay often wait months or even years to get a formal diagnosis and to obtain services, according to research by the First 5 Center for Children’s Policy. By the time these children receive treatment — which is often contingent upon getting a diagnosis — they may have missed out on a critical window of time during which interventions for disorders such as autism or Rett’s Syndrome can be most effective. These delays have likely become more acute during the pandemic, as families are less likely to be visiting doctors for check-ups and children aren’t interacting as much with early childhood professionals who can spot signs of developmental challenges, experts with the First 5 Center said.
A major reason for the delay, advocates and parents say, is the complexity and inefficiency of the state’s system for detecting and serving young children with developmental issues. To get services for their children, parents often must navigate a dizzying array of health care providers, special education entities, and insurance programs, each with their own eligibility criteria and interpretation of the rules, the report found. Many parents said they received little support or guidance to help them with this process.
“I felt like I had been shot out like a pinball and I just kept bumping into these different things that were kind of pushing me along,” said Heather Breen of Walnut Creek in Contra Costa County. Breen fought for over a year to get a diagnosis and therapy for her daughter, Clara, who has autism and a seizure disorder. Clara was almost 4 when she finally started getting services, even though her parents first noticed possible delays when she was 2.
“No one put their arm around me and shepherded me,” said Breen. “Each person along the way was just doing their little piece and there was no cohesive system where each person understood and knew what the previous person had said and done.”
