Worlds of Autism: Across the Spectrum of Neurological Difference

6. Caring for Autism: Toward a More Responsive State

143 6 Caring for Autism Toward a More Responsive State Kristin Bumiller Fewer than thirty years ago, the biomedical definition of autism gained acceptance over psychological explanations that often placed blame on the family (Bumiller 2009). This change in the understanding of autism ushered in new possibilities for treatment and forms of parent advocacy (Silverman 2011). This transformation was coterminous with a major shift in responsibility for the care of disabled children that began in the late 1970s. Children with disabilities were no longer fated to become wards of the state; the movement for family-based care revolutionized the disability world. The deinstitutionalization of care transformed expectations about the potential for a normal life for disabled individuals and made parents responsible for meeting their children’s needs at home while claiming their share of public resources through rights-based entitlements. But it is also important to recognize that as the system of institutionalized care diminished, so did assumptions about protecting the home from the burdens of caretaking for the disabled . The state was no longer invested in protecting the middle-class family from the extraordinary demands of caring for a disabled child in order to preserve the normalcy of family life (Eyal et al. 2010). These transformations are dramatic and recent; the first generation of children raised outside of institutions achieved an unprecedented level of independence. Disability advocates, many of whom worked in or had children who resided in the state homes for the “feeble-minded,” ardently romanticize this change for good reasons—it brought an end to public institutions that warehoused the disabled and allowed for abominable treatment “behind closed doors.” The move to communitybased care also came with the promise of empowering parents to make decisions about their children, support for independent living, opportunities for social inclusion, and social justice for people with 144 KRISTIN BUMILLER disabilities (“Community Imperative” 1979; Gleeson 1997; Lakin and Bruininks 1985). Despite its intent to bring people into the community, this chapter argues that the advent of the biomedical model (with its shift to parental responsibility), in conjunction with the growth of neoliberal social policies , has created a system of privatized care for children with autism.1 Drawing primarily on the context of the United States (in ways that may apply broadly to other Western democratic societies), the consequences of this shift to community-based care for families are explored, as well as the implicit model of state responsibility it furthers. This shift brought “community” integration in name only, for the location of care has moved from public institutions to the isolation of the household. Under this new system, the state plays a limited role in supporting the work that takes place inside private homes and in most cases will not allow for cash benefits to families. The state’s narrowed responsibility for children with disabilities primarily resides with public schools, and the viability of this option is almost entirely dependent upon an adequate individualized education plan. Although community-based care for children with disabilities held the promise of granting greater autonomy and decision-making power to parents, this chapter demonstrates that the exercise of this power is highly variable. As a consequence , the idealization of normal life in the public sphere is threatened when inclusion policies appear unsuccessful and parents and children face intolerance in their community. The focus on the family often de- flects attention from the failure of public institutions (including schools, Social Security disability, employment services, housing programs, and medical care) to cope with all the immediate challenges presented by the growing number of autistic children. These issues are profoundly important for critical autism studies. Much of critical scholarship has been driven by efforts to construct an autism identity that recognizes the positive uniqueness of characteristics of people on the autism spectrum while also acknowledging that personhood is not defined in totality by one’s disability. The focus on identity has fueled high expectations for the lives of people with autism, yet it has also drawn attention away from the centrality of material resources in creating more opportunities. Concerns are raised, most frequently by neurodiversity advocates, that popular culture and some advocacy groups place too great an emphasis on how autism is a burden to CARING FOR AUTISM 145 both the individual and society (Bagatell 2010). It is therefore crucial to break down the seeming contradiction between focusing on either identity or resource issues...