Uncertainty is a major theme of The Politics of Autism. In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
\Samantha M. Ross, Justin A. Haegele, Kristy Anderson, Sean Healy have an article at Autism Research titled "Evidence of item bias in a national flourishing measure for autistic youth."
Flourishing is a positive health indicator that aligns with strengths-based perspectives and measures within autism research. Flourishing indicators were recently included in the National Survey of Children's Health (NSCH) and have been used to evidence disparities in flourishing experienced by autistic children compared to non-autistic peers. Yet, little has been done to examine the utility of standard flourishing items for this population. This study examined the NSCH caregiver-reported flourishing items for measurement item bias. A cross-sectional, representative sample of autistic and non-autistic US children aged 6–17 years (n = 41,691) was drawn from the 2018–2019 NSCH public dataset. A confirmatory factor analysis using a multiple indicators and multiple causes model (MIMIC-CFA) was conducted to (1) test for differential item functioning (DIF; i.e., measurement bias); and (2) estimate latent mean group differences after controlling for DIF. Findings supported a 3-factor (social competence, school motivation, and behavioral control), 10-item model structure consistent with past literature, yet measurement bias was evident for 6 of the 10 items. Persistent group differences, after accounting for DIF and covariates, indicates that caregivers of autistic children perceive their children are experiencing meaningfully lower flourishing outcomes compared to caregivers of non-autistic children. However, evidence of measurement bias for items related to the social competence dimension calls into question the applicability of this measure for autistic children. Further interpretation of group differences and use of this measure should be approached with caution.
\From the article:
Significant autism-based differences on all three flourishing subdomains (social competence, behavioral control, and school motivation), and six of the 10 flourishing items (including: is bullied, bullies others, argues, difficulty making friends, finishes tasks, argues too much, and shares ideas with caregiver), after controlling for covariates and DIF, support Hilton et al.’ (2019) conclusion that caregivers of autistic children perceive their children to be experiencing meaningfully lower flourishing outcomes, compared to caregivers of non-autistic children. However, these group differences should be interpreted with caution. Evidence of measurement bias for all items in the social competence subdomain flags this as a “disability-confounded health measure” (Krahn et al., 2009). Any observed group differences in flourishing may, in part, be attributable to differences in how caregivers of autistic and non-autistic children understand and respond to these survey items. This “noise” in the data makes the measure less sensitive and harder to interpret (Krahn et al., 2009). While effect sizes were small (<0.30), measurement bias indicates caregivers of autistic and non-autistic children, who have comparable mean scores in the social competence dimension of flourishing, are responding differently to specific survey items. A misinterpretation of autistic children’s lower scores in social competence as deficits in flourishing, rather than differences in caregiver-perceived health experiences, may perpetuate ableist notions of which childhood behaviors do (and do not) constitute “thriving” in physical and psychosocial development. Our fundamental concern is that the flourishing measure does not reflect the spectrum of diverse, but equivocal, social behaviors autistic and non-autistic children experience. Instead, non-neurotypical behaviors implicitly signal lower potential for an upward developmental trajectory (Krahn et al., 2009), and consequently, scores on the social competence items may be inaccurately pulling down autistic children’s flourishing scores (Tavernor et al., 2013). A neutralized measure that is more sensitive to “autistic flourishing” experiences is needed to minimize the risk for erroneous research conclusions (Silverman, 2019).