Patterns of Continuity and Change in the Psychosocial Outcomes of Young Autistic People: a Mixed-Methods Study.

Abstract

Long-term longitudinal studies have consistently demonstrated that the outcomes of autistic individuals are highly variable. Yet, these studies have typically focused on aspects of functioning deemed to be critical by non-autistic researchers, rather than autistic people themselves. Here, we uniquelyexamined the long-term psychosocial outcomes of a group of young autistic people (n = 27; M age = 17years; 10months; 2 female) followed from childhood using a combination of approaches, including (1) the standard, normative approach, which examined changes in diagnostic outcomes, autistic features and adaptive functioning over a 9-year period and (2) a qualitative approach, which involved semi-structured interviews to understand young people's own subjective experiences of their current functioning. On average, there was no significant change in young people's diagnostic outcomes and autistic features over the 9-year period, although there was much variability at the individual level. There was far less variability, however, in young people's everyday functioning, with marked declines over the same period. While these often-substantial everyday challenges aligned well with young people's subjective reports, there was no straightforward one-to-one mapping between self-reported experiences of being autistic and standard measures of severity. These findings call for concerted efforts to understand autistic outcomes through the mixing of quantitative and qualitative reports and for sustained and targeted interventions during adolescence in those areas that matter most to young people themselves.