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Friday, May 13, 2022

Federal Policy on ASD

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
  • Public policies shape the practical realities of those affected by autism.
  • Socially constructed understandings of autism are embedded in policies.
  • Federal ASD-specific policies reinforce ASD as a largely medicalized construct
  • Initial ASD policies framed children with ASD as “worthy” of recognition.
  • Later ASD polies conferred material resources on medical research and surveillance.
Public policies play an influential role in shaping public opinion about health conditions, who is affected by them, and potential pathways for identification and intervention. This study draws upon a social constructionist perspective of policy design and disability to examine how autism spectrum disorder (ASD) has been framed in United States federal legislation. Qualitative content analysis of autism legislation passed between 1973 and 2019 indicates that policies reinforced ASD as a largely medicalized, neurobiological condition of childhood; this was reflected in both the policy aims, sources of knowledge and groups prioritized to address ASD; and the symbolic or material resources committed (or not committed) by enacted federal legislation to specific constituencies. Policy aims of early ASD legislation were symbolic in nature, focusing predominantly on framing children with ASD as a group worthy of public recognition. More recent legislation, in contrast, conferred material resources – albeit in targeted ways. Funding for surveillance and medical research on causation, early detection, treatment, and health professional training were prioritized with little attention to either service delivery needs of individuals with ASD and their families, supports over the lifecourse, or the social factors influencing ASD.

From the article:

Enacted federal legislation also pays little attention to addressing the “service cliff” individuals with ASD can face in early adulthood (Cheak-Zamora et al., 2014; Volkmar et al., 2017) or subsequent needs that may arise throughout one's lifecourse (Chan and Leung, 2021; Gillespie-Lynch et al., 2021). More than hortatory attention to adults did not appear until CARES 2014 and it remained limited. For example, despite surveillance of ASD in adulthood being added into recent policies such as CARES 2014 and 2019, population-based estimates (state and national) do not exist due to the paucity of surveillance programs funded for this purpose (Dietz et al., 2020).

Lack of attention to adults with ASD and caregivers in the allocations that are supported by federal ASD policy might stem in part from the issue context around ASD originally being established and dominated by pediatricians (Happé and Frith, 2020). Ensuing legislation and awareness campaigns revolved around children, despite decades of evidence suggesting that ASD characteristics can persist over the lifespan (Howlin and Magiati, 2017; Nicolaidis et al., 2014). The dominant frame of ASD as a childhood disorder may also reflect differences in societal views about who is deemed worthy of policy intervention, as well as different processes of social monitoring and control that vary over the lifecourse (Collins and Mead, 2020). Children's perceived deservingness may dissipate with age, underscoring the variability of group constructions and power over time (Collins and Mead, 2020). The dominant framing could ultimately send the message that ASD is not a lifespan issue, undermining the challenges many adults and their caregivers report facing.