Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:
If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.
Key Points
Question How prevalent is “doing well” in 5 developmental domains (communication, socialization, activities of daily living, internalizing, externalizing) as assessed by proficiency and growth in children with autism spectrum disorder in midchildhood, and what attributes of children and families are associated with it?
Findings In this cohort study including 272 children, between 20% and 49% of children with autism spectrum disorder were proficient within the 5 developmental domains, while 13% to 34% of children demonstrated growth. Doing well was associated with preschool scores on that specific outcome domain, as well as early language skills, household income, and family functioning.
Meaning These findings demonstrate the potential usefulness of taking a strengths-based approach to outcome assessments, while the importance of family income and functioning remind us that disabilities do not exist apart from a social context.
From the article:
The finding that family functioning is an important factor in several aspects of doing well suggests a new area of research focusing on the community and societal factors, whereby a well-functioning family might be able to improve outcomes for a child with ASD. Although we know that both proximal (ie, family functioning) and distal (socioeconomic disparities) contextual factors can influence typical child development, little research on psychosocial mediators and moderators of outcomes has been done in ASD. Our data support the need for such enquiries. One potential hypothesis to pursue is the possibility that higher income and good family functioning allow a family to access more resources or to apply developmentally appropriate and evidence-based interventions with greater fidelity. A research program embedded in a health services framework would be better positioned to address this issue in finer detail, especially given the results of the meta-analysis from Rogers et al10 of early interventions.
Because doing well is not a unitary construct, supporting children to do well will take a multipronged effort to address child, family, community, and societal factors. Systematically addressing the full breadth of modifiable factors during a child with ASD’s development may ensure that more children will do well over time.
