Outcomes and Needs In Mid-Later Adulthood

Background:  There have been a number of recent studies on trajectories of development from child to adulthood in individuals with autism (eg Farley et al., 2009; Taylor & Seltzer, 2010).These have generally indicated a decrease in severity of autistic symptomatology over time. Improvement also tends to be greater in individuals who are not intellectually impaired. However there is also clear evidence that access to adequate support networks decreases once individuals leave full time education, and this is particularly the case for those whose IQ lies within the normal range. Moreover, mental health problems tend to increase with age.

Follow-up periods in these studies have ranged from around 10 to 20 years, with the mean age of participants being late 20’s to early 30’s. There have been no longer term follow-up investigations exploring outcomes and needs involving older individuals with ASD

Objectives:  To examine outcomes and changes in functioning over time in a cohort of individuals first diagnosed in early childhood and followed up over a period of 35-40 years.

Methods:  Participants: 47 individuals (40 males, 7 females) initially assessed in childhood (mean age 6 years) as having autism and a performance IQ ≥70.  Diagnosis was reconfirmed by the ADI at an average age of 29 years when data on cognitive and social outcomes were also collected (Howlin et al., 2004). The current follow-up was conducted at a mean age of 44 years (range 29 to 64 years).  Measures: IQ and language data, and information on social functioning and mental health were collected from participants using standardised interviews and questionnaires. Informants (mainly parents) provided data on current levels of autistic symptomatology, social outcomes and difficulties, and mental health problems. Analysis: Change over time was analysed using analysis of variance and regression techniques to explore the impact of child variables on adult outcome

Results:  For most individuals, IQ remained relatively stable during the adult years but some showed a significant decline in IQ from child to adulthood. Autism severity scores decreased with time. However, around two thirds of the cohort were not in paid employment, did not live independently and had never had close friendships. In contrast, rates of mental health problems were relatively low compared to earlier reports. For those living alone, social support was limited and many individuals remained dependent on their elderly parents for continuing support.  In this group childhood IQ was not a strong predictor of adult outcome. Data analysis is ongoing to explore other predictors of outcome

Conclusions:  In this clinical cohort, first seen as children in the 1960’s and 1970’s, outcome in mid-late adulthood was generally poor, with few individuals living independently or being fully socially integrated. Those who had achieved a higher degree of independence as adults had access to little support other than that provided by parents. The implications of these findings for services for older individuals with autism will be adressed