In The Politics of Autism, I discuss the policy paradoxes of the issue. I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association.
We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.
Full text: here: https://www.scribd.com/document/475658529/Autism-and-Accountability
Autism- and disability-related programs exist at numerous federal agencies to address a wide variety of issues ranging from health, research, disability services, justice, housing, employment, transportation, military needs, communication, and other diverse issues. Given the large size and distributed nature of federal activities, the U.S. Congress and federal agencies have also put in place several structures to coordinate federal activities around disabilities and, in some cases, autism specifically. These coordination structures foster interdepartmental and interagency communication and collaboration on issues that are essential to autism and disability-related federal activities.
The Interagency Autism Coordinating Committee (IACC) is a foundational part of the federal coordination structure for autism that was created under the Children’s Health Act of 2000 (Public Law106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). It is the only autism-specific interagency federal advisory committee in the federal government. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes officials representing an array of federal departments and agencies and public members who represent a variety of perspectives within the autism community. Collectively the committee provides advice to the HHS Secretary concerning issues related to autism and coordinates federal autism efforts.
In 2014, Congress added a new component to the federal coordination structure by requiring in the Autism CARES Act of 2014 the designation of a National Autism Coordinator (NAC), “an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities.” The duties of the NAC include coordinating and implementing federal autism research, services, and support activities, taking into account the IACC Strategic Plan, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on Autism (FIWA), an all-federal working group of representatives from multiple federal departments and agencies, most of which are also represented on the IACC. The NAC has led the development of several comprehensive reports to Congress on federal autism activities and other projects requiring cross-agency collaboration.
A third layer of interagency and intra-agency coordination is composed of a series of federal advisory committees and coordinating committees that work on specific issues related to autism and disabilities. At the National Institutes of Health (NIH), the NIH Autism Coordinating Committee coordinates NIH intra-agency efforts on autism research. Other advisory committees and agencies across the federal government that contribute to federal coordination on issues of relevance to autism and disabilities include:
- 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy Draft January 2023 11
- Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act Council (family caregiver issues)
- Federal Partners in Transition (youth with disabilities)
- National Council on Disability (a federal agency for disability policy)
- Interdepartmental Serious Mental Illness Coordinating Committee (mental illnesses that may cooccur with autism)
- Federal Communications Commission Disability Advisory Committee (communication technology for people with disabilities)
- National Advisory Committee on Individuals with Disabilities and Disasters (disaster preparedness and response)
- Advisory Committee on Accessible Air Transportation - ACCESS Advisory Committee (disabilities and air transportation).
Each of these advisory committees focuses on specific topics related to disabilities, which are informative to the efforts of the IACC to coordinate autism activities.