James B McCauley1, Andrew Pickles2, Marisela Huerta3, Catherine Lord1. 1. Department of Psychiatry, University of California, Los Angeles, Los Angeles, California, USA. 2. Department of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK. 3. Centre for Autism and the Developing Brain, Weill Cornell Medicine, New York City, New York, USA.
Abstract
Identifying positive outcomes for a wide range of intellectual abilities in autism spectrum disorder (ASD) remains a challenge. Several past studies of autistic adults have used outcome definitions that do not reflect the experiences of less cognitively able adults. The aim of the current study was to (1) define three domains of outcomes: autonomy, social relationships, and purpose, and (2) examine how these outcomes relate to concurrent aspects of adult functioning. Using data from a longitudinal sample of 126 adults (85% diagnosed with ASD at some point), mean age 26, who first entered the study in early childhood, we generated distinct outcomes for less (daily living skills above an 8-year-old level, having regular activities outside the home, and social contacts outside the family) and more cognitively able adults (living independently, having paid employment, and at least one true friend). Verbal IQ, assessed in adulthood, was a significant predictor of more outcomes achieved for individuals within more and less cognitively able groups. For less cognitively able adults, having ever received a formal ASD diagnosis (in contrast to current Autism Diagnostic Observation Schedule [ADOS] CSS scores) was associated with lower odds of positive outcomes. For more cognitively able adults, living skills and happiness measures were positively associated with number of outcomes met; higher ADOS CSS, internalizing and externalizing symptoms, being racially diverse, and having caregiver education below college graduation were all negatively associated with the number of positive outcomes. Tailoring outcomes to ability levels may lead to better identification of goals and service needs. LAY SUMMARY: This article describes the outcomes of autistic adults who are more and less cognitively able. For less cognitively able individuals, an earlier autism diagnosis was negatively related to outcomes. Several factors that were associated with positive outcomes for more cognitively able individuals, including daily living skills, fewer mental health problems, family demographics, and subjective measures of happiness. Our study identifies several important factors for families, individuals, and service providers to consider and discuss when planning the transition to adulthood. Autism Res 2020, 13: 1548-1560.
Identifying positive outcomes for a wide range of intellectual abilities in autism spectrum disorder (ASD) remains a challenge. Several past studies of autistic adults have used outcome definitions that do not reflect the experiences of less cognitively able adults. The aim of the current study was to (1) define three domains of outcomes: autonomy, social relationships, and purpose, and (2) examine how these outcomes relate to concurrent aspects of adult functioning. Using data from a longitudinal sample of 126 adults (85% diagnosed with ASD at some point), mean age 26, who first entered the study in early childhood, we generated distinct outcomes for less (daily living skills above an 8-year-old level, having regular activities outside the home, and social contacts outside the family) and more cognitively able adults (living independently, having paid employment, and at least one true friend). Verbal IQ, assessed in adulthood, was a significant predictor of more outcomes achieved for individuals within more and less cognitively able groups. For less cognitively able adults, having ever received a formal ASD diagnosis (in contrast to current Autism Diagnostic Observation Schedule [ADOS] CSS scores) was associated with lower odds of positive outcomes. For more cognitively able adults, living skills and happiness measures were positively associated with number of outcomes met; higher ADOS CSS, internalizing and externalizing symptoms, being racially diverse, and having caregiver education below college graduation were all negatively associated with the number of positive outcomes. Tailoring outcomes to ability levels may lead to better identification of goals and service needs. LAY SUMMARY: This article describes the outcomes of autistic adults who are more and less cognitively able. For less cognitively able individuals, an earlier autism diagnosis was negatively related to outcomes. Several factors that were associated with positive outcomes for more cognitively able individuals, including daily living skills, fewer mental health problems, family demographics, and subjective measures of happiness. Our study identifies several important factors for families, individuals, and service providers to consider and discuss when planning the transition to adulthood. Autism Res 2020, 13: 1548-1560.
Authors: Robert Hodgson; Mousumi Biswas; Stephen Palmer; David Marshall; Mark Rodgers; Lesley Stewart; Mark Simmonds; Dheeraj Rai; Ann Le Couteur Journal: PLoS One Date: 2022-08-16 Impact factor: 3.752