IntroductionAutism spectrum disorder is a highly heterogeneous diagnosis. When a child is referred to autism services or receives a diagnosis of autism spectrum disorder it is not known what their potential adult outcomes could be. We consider the challenge of making predictions of an individual child’s long-term multi-facetted adult outcome, focussing on which aspects are predictable and which are not.MethodsWe used data from 123 adults participating in the Autism Early Diagnosis Cohort. Participants were recruited from age 2 and followed up (...) repeatedly through childhood and adolescence to adulthood. We predicted 14 adult outcome measures including cognitive, behavioral and well-being measures. Continuous outcomes were modeled using lasso regression and ordinal outcomes were modeled using proportional odds regression. Optimism corrected predictive performance was calculated using cross-validation or bootstrap. We also illustrated the prediction of an overall composite formed by weighting outcome measures by priorities elicited from parents.ResultsWe found good predictive performance from age 9 for verbal and non-verbal IQ, and daily living skills. Predictions for symptom severity, hyperactivity and irritability improved with inclusion of behavioral data collected in adolescence but remained modest. For other outcomes covering well-being, depression, and positive and negative affect we found no ability to predict adult outcomes at any age. Predictions of composites based on parental priorities differed in magnitude and precision depending on which parts of the adult outcome were given more weight.ConclusionVerbal and non-verbal IQ, and daily living skills can be predicted well from assessments made in childhood. For other adult outcomes, it is challenging to make meaningful predictions from assessments made in childhood and adolescence using the measures employed in this study. Future work should replicate and validate the present findings in different samples, investigate whether the availability of different measures in childhood and adolescence can improve predictions, and consider systematic differences in priorities. (shrink)

Medical decision making by patients is respected as a lawful exercise of free will and agency unless patients are found to lack “competence.” Yet measures of competence in medical decision making typically assess only cognitive abilities. Emotionality is involved in decision making and may affect how far patients’ decisions to accept or refuse medical treatment embody free will. Moreover, neurodivergence, or atypical neurological makeup, is often diagnosed as neurodegeneration, neurodysfunction, neural damage, or neural difference and frequently leads to difficulties in (...) considering the emotional aspects of decisions that standard tests do not measure or disclose. Neurodiversity activists assert that their neural differences are not pathologies to be treated or cured but are alternative ways of being that should be accepted as neuroequal. Nevertheless, who may claim to be neurodiverse is uncertain. We focus on atypical emotionality to consider the limits of neurodiversity in relation to measures of competence, particularly in relation to end-of-life decision making. (shrink)

The article provides a conceptualization of self(-illness) ambiguity and investigates to what extent self(-illness) ambiguity is ‘special’. First, we draw on empirical findings to argue that self-ambiguity is a ubiquitous phenomenon. We suggest that these findings are best explained by a multidimensional account, according to which selves consist of various dimensions that mutually affect each other. On such an account, any change to any particular self-aspect may change other self-aspects and thereby alter the overall structural pattern of self-aspects, potentially leading (...) to self-ambiguity. Second, we propose that self-ambiguity comes in degrees and should be understood as a spectrum (as opposed to there being qualitative differences among instances of self-ambiguity). Third, we argue that complexity is the most useful dimension to organize cases of self-ambiguity, with mundane instances of self-ambiguity on the one end and self-illness ambiguity on the other end of the spectrum. Fourth, we address the promises and perils of narrativity with regard to self-ambiguity. Finally, we link our deflationary account of self(-illness) ambiguity to pattern theories of self. (shrink)

Volume 20, Issue 4, May 2020, Page 35-37.

Many services can assist autistic people, such as early intervention, vocational services, or support groups. Scholars and activists debate whether such services should be autism-specific or more general/inclusive/mainstream. This debate rests on not only clinical reasoning, but also ethical and social reasoning about values and practicalities of diversity and inclusion. This paper presents qualitative results from a mixed-methods study. An online survey asked autistic adults and parents of autistic people of any age in Canada, the United States, Italy, France, and (...) Germany what types of services they prefer (autism-specific, mixed-disability, or general/inclusive/mainstream). This paper presents the advantages and disadvantages of different service types, identified through inductive thematic coding and organized into higher-level themes focusing on clinical, structural, societal, interpersonal, and personal aspects of services. Autism-specific services were praised for addressing autism needs, helping clinically, and providing interpersonal benefits of others understanding autism; general services were praised for inclusion, helping clinically, community obligations and awareness, and social skills development. Looking at the interaction of these different aspects in respondent narratives nuances debates about autism-specificity, with a complex interplay between clinical, interpersonal, and societal aspects. Clinical and social perspectives are not necessarily separate and opposed, but intertwined based on different understandings of inclusion. Compared to parents, adults focused more on harm/safety issues, enjoyment, and stereotyping among other themes, attending to personal themes. These findings do not identify one best service type, but suggest that determining the right service in a given context may be informed by definitions of and goals about inclusion. (shrink)