Longitudinal Outcomes in Autism: Community Inclusion and Living Skills in Adulthood

Background:  The overwhelming majority of studies indicate that adults with autism remain largely dependent upon others for support in day to day activities.  Beyond age and cognitive ability, little is known about childhood characteristics and how they relate to adult outcomes.

Objectives:  This study aimed to describe adult community inclusion (living arrangements, daytime activities, community social involvement) and living skills (community, self care, and communication skills) outcomes in a community sample of children and adolescents with autism.  We also aimed to examine childhood predictors of outcomes including the role of childhood individual (age, gender, IQ, behaviour and emotional problems) factors and the environment (socio-economic disadvantage).

Methods: This study followed a cohort of 119 children and adolescents over 18 years with five waves of data collection.  The mean age of the sample at Time 1 was 8.7 years, and 24.8 years at Time 5.  Participation has been consistently high throughout the study, with 77% of the original sample participating at Time 5.  Outcomes in terms of community inclusion were assessed for all participants at Time 5, encompassing information on living arrangements, daytime activities, and community social involvement.  Living skills were assessed using the Index of Social Competence.

Results:  A significant proportion (61%) of participants remained living in the family home at the time of adult follow up (Time 5).  Degree of ID was the only significant predictor of Time 5 living arrangement being ‘in care’ or ‘independent’, and the only significant predictor of Time 5 main daytime activity being study or paid employment.  Childhood (Time 1) behaviour and emotional problems were not associated with Time 5 daytime activities, living arrangements, or living skills.  Higher rates of childhood behaviour problems did indicate a higher likelihood of being engaged in activities for fewer than 20 hours per week.  Community social involvement in adulthood (Time 5) was not significantly associated with Time 1 age, gender, degree of ID, socio-economic disadvantage, or behaviour and emotional problems.  Self care and communication skills were associated with Time 1 socio-economic disadvantage. The relationship between childhood behaviour problems and Time 5 living skills was found to be significant across the three domains of living skills.

Conclusions:  Compared to earlier research, fewer adults with autism are now living in care and more are engaged in daytime activities.  Despite this, a significant number continue to live at home with their families and the number in paid employment is still low.  Poor living skills are associated with these outcomes, and research needs to address the best way to improve skills to facilitate and support community inclusion.  Childhood degree of ID is consistently associated with adult outcomes, and children with severe ID seem to be particularly at risk for poor community inclusion outcomes as adults.  It is however important to consider that childhood IQ is not the sole predictor of outcome, and a better IQ does not guarantee a better outcome.  Most adults with autism continue to need support from families and services.