Autistic adults are typically denied vital services relating to employment, community living, education, medical care and quality of life, driving health and income disparities and the lifetime costs associated with autism, according to researchers.
Autism policy is overwhelmingly focused on children to the exclusion of adults, researchers said yesterday at the American Public Health Association annual meeting in Boston. Children can benefit from legal entitlements, the support of parents and guardians, and pediatric-centered health care that tends to promote continuity, familiarity and an emphasis on the whole family. In contrast, autistic adults have to grapple with eligibility rather than entitlements. Even when they are are eligible for state services, wait times can be as long as fifteen years, said Nanette Elster, JD, MPH, lecturer at Loyola University Stritch School of Medicine, co-author of a study based on interviews with parents of autistic young adults. Some autistic adults struggle with the transition to independent decision-making and to adult health care settings, which are less integrated and navigable that pediatric systems. Income and racially-based disparities related to autism tend to widen in adulthood, Elster said.
The lifelong costs of autism were conservatively estimated at $3.2 million per person in a 2007 study by Michael Ganz of the Harvard School for Public Health. The largest component, adult care, far exceeded childhood costs. The figure also accounts for lost or diminished employment opportunities. Only half of young autistic adults report that they have been paid for work, compared to almost all young adults in the general population, according to a recent study in the Journal of the American Academy of Child and Adolescent Psychiatry. Autistic adults fare badly in employment even compared to those with other disabilities. When they do find work, it tends to be menial, low paid, part time and inadequately supported, said Kayhan Parsi, JD, PhD, professor of bioethics & health policy at the Neiswanger Institute for Bioethics, Loyola University Chicago. Paid employment is closely related to quality of life and health outcomes, he said.
The barriers to health care faced by autistic adults are systemic and generate startling, though under-studied, health disparities, said Scott Michael Roberston, PhD, of the Pennsylvania Developmental Disabilities Council and the Interagency Autism Coordinating Committee, a federal advisory committee.
Some states are exploring ways to promote the self-sufficiency and well-being of their increasingly visible population of autistic adults. Pennsylvania has created a dedicated Bureau of Autism Services within the Department of Developmental Services and removed the IQ-based eligibility requirement, a barrier for autistic adults whose challenges are developmental rather than intellectual. Nevertheless, many remain excluded by the Intermediate Care Facilities criteria, an outdated measure of functioning. For many autistic adults, a relatively low level of support can make the crucial difference between self-sufficiency and dependence, or prevent their entering the criminal justice system for reasons relating to their disability, said Dr. Robertson. The Massachusetts legislature is considering bills that would enable some autistic people to receive support from the Department of Developmental Services and the Department of Mental Health (disclosure: I am involved in advocacy efforts relating to these bills).
Families dealing with autism face the greatest challenges when their children are young and again when they reach early adulthood, said Professor Parsi: “We need to develop policies that unburden families and support the young adults who are coming out of the system and hopefully joining us in the workplace.”
The $3.2 million lifetime costs of autism figure and its use by some advocates have been challenged by autistic commentators. In Debunking the Costs of Autism (2006), the blogger Joseph questions the methodology behind the numbers. In Revisiting the costs of autism (2009), Michelle Dawson of the University of Montreal discusses some early interventionists' use of the data to argue for increased investment in Applied Behavioral Analysis, a childhood therapy that is controversial within the autism community.
Messages about the financial "burden" associated with autism risk implying that autistic people are themselves burdensome. That is not the premise of this post. Analysing the costs associated with autism can help demonstrate that higher expenditure (on institutionalization, for example) does not necessarily represent a higher standard of care or support, or actual need. The costs associated with autism are not the costs of autism itself, but of our society's approach to autism. It seems likely that a significant proportion of autism funding could be more appropriately and meaningfully invested on less costly resources that allow autistic adults autonomy over their own lives.
Image Madison House Autism Foundation, a Maryland organization addressing the needs of autistic adults.