In The Politics of Autism, I write that everything about autism is controversial
As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding. Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want. ABA “works” in the sense that it helps some autistic people become more like their typically developing peers. Most parents regard such an outcome as desirable, but not all people on the spectrum agree.At Autism, Julie Lounds Taylor explains the difficulty of analyzing outcomes for autistic adults:
One of the major roadblocks to making progress in this area is perhaps one of the most basic—there is little consensus on what outcomes are actually good outcomes and thus should be the target of services and intervention.
Given the many potential areas of need, it is unclear which potential aspects of adult life, if altered, would have the greatest impact on well-being and quality of life. If an adult with autism has few friends, does this indicate a “bad” outcome? Given the heterogeneity of autism, it is likely that some adults could be distressed by this situation whereas others would find it satisfying. Is paid employment always an indicator of a “good” outcome? Or is the fit of the vocational activity to the interest and skills of the individual more important? Should community living be considered a “good” outcome for all? As researchers, we often make value-based decisions about what activities we consider to be a good outcome, yet the very same activity or type of activity might have a different meaning to adults across the autism spectrum.
Perhaps then, one should take a personalized approach, allowing each person and family to define which outcome is the most important to target for that person. However, that approach is problematic for research purposes, when some degree of commonality and standardization is necessary. It may be that a hybrid of standardized and personalized approaches will be most helpful when defining “good” outcomes—particularly given the vast heterogeneity observed across numerous domains among adults with autism.