Work, living, and pursuit of happiness: Examining the current outcomes of autistic adults
Dr. Catherine Lord
In a sample of over 200 children who have been followed since they were around 2 years old, most of whom were diagnosed with autism at that time, Dr. Catherine Lord and her research team have tracked autism symptoms, cognitive abilities, behavioral and emotional challenges, quality of life, and activities as they have grown up. Now that this sample is approaching age 30 years, we are interested in examining what they are doing in adulthood, how much independence they have, and what factors, from early and later in development, predict their engagement in work, independent living, friendships, and levels of challenges. In our recent manuscript, “The adult outcome of children referred for autism: typology and prediction from childhood”, published in the Journal of Child Psychology and Psychiatry (Pickles et al., 2020), we identified and compared four groups of individuals who had commonalities in their adult functioning, including in their employment, living situations, autism symptoms, and cognitive abilities. The groups characterized progressively better outcomes: two groups that described individuals who were less cognitively able but distinguished by more or fewer behavioral challenges; one that was comprised of individuals with average cognitive abilities, higher autism symptoms, more behavioral challenges, and less overall independence; and one that described individuals who were more cognitively able, working, living independently, with less behavioral and mental health challenges. We were able to predict these groups from verbal cognitive abilities and autism symptoms measured at 2 years old, with predictions stronger at 3 and very strong by 9 years of age. Cognitive abilities, including language level, and autism symptoms were accounted for almost all of the variance in objective measures of independence but there was wide variation in well-being and mental health symptoms within each group. Another recent paper by our colleagues in the UK describing a long term follow up of a sample of children with autism, “Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort”, published in the Journal of the American Academy of Child & Adolescent Psychiatry (Simonoff et al. 2019), found gains in cognitive abilities from age 12 to 23 once again related to initial language levels. They also found attending mainstream as opposed to specialist schools (such as a one specific to children with emotional/behavioral problems) was related to higher cognitive abilities and lower autism symptoms in adulthood. Other projects currently under consideration in our lab begin to describe other methods of capturing adult outcomes, including with measures of daily living skills, which are important for the development of independence even within a minimally verbal population. So far all of our findings demonstrate the enormous amounts of support that families give to their adult children, as well as how much more information we continue to need in order to provide better resources for families and autistic adults.