Twenty‐year outcome for individuals with autism and average or near‐average cognitive abilities

Abstract

Previous studies found substantial variability in adult outcome for people with autism whose cognitive functioning was within the near-average and average ranges. This study examined adult outcome for 41 such individuals (38 men and 3 women) originally identified through an epidemiological survey of autism in Utah. Mean age at the time of their previous cognitive assessment was 7.2 years (SD=4.1, range=3.1-25.9 years) and at follow-up was 32.5 years (SD=5.7 years, range=22.3-46.4 years). Outcome measures included standardized assessments of diagnostic status, cognitive ability, and adaptive behavior. Additional information collected concerned demographic variables, indicators of independence, social relationships, medical and psychiatric conditions, and social service use. Outcomes for this sample were better than outcomes described in previous work on individuals with similar cognitive functioning. For example, half of the participants were rated as "Very Good" or "Good" on a global outcome measure. As in previous studies, there was considerable variability in measured cognitive ability over time. Over half of the sample had large gains or losses of cognitive ability of greater than 1 standard deviation. Cognitive gain was associated with better outcome, as was better adaptive functioning. While all participants had baseline IQs in the nonimpaired range, there was limited evidence to support the use of other early childhood variables to predict adult outcome.

Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study

“…The findings also highlight the contrast in case ascertainment between the methods available during a "pre-epidemic" study and those used extensively today. Our group is currently examining the adult outcomes of the 1980s participants, and has already published work following many of the high-functioning participants (Farley et al 2009). Understanding how our newly identified cases differ from their DSM-III-identified counterparts may shed light upon our understanding of the current adult ASD population and how to provide support for them and their families in the years ahead.…”

Unexpected changes of itinerary – adaptive functioning difficulties in daily transitions for adults with autism spectrum disorder

“…Recent reports suggest that strong adaptive functioning skills are associated with optimal outcomes for adults with ASD (Farley et al 2009cited in Matthews et al 2015. Patterns of negative correlation between age and adaptive functioning and cognitive functioning advantage widening with age have been found in ASD (Klin et al 2007;Perry et al 2009;Kanne et al 2011).…”

“…Studies examining adaptive functioning in adults with ASD and no cognitive impairment show that daily living skills (DLS) (e.g. meal preparation, money and time management) age-based standard scores are an area of relative strength when compared to the communication and socialisation standard scores (Farley et al 2009;Matthews et al 2015;see Klin et al 2007 for exception). In adolescents, however, DLS standard scores do not differ significantly from communication and socialisation standard scores.…”

Transition to Adulthood for High-Functioning Individuals with Autism Spectrum Disorders

“…While individuals with ASD and intellectual disability generally do not achieve typical outcomes such as independent living in adulthood, the performance varies widely in those with ASD and at least average intelligence (Howlin et al, 2004). Instead, daily living skills -perhaps more so than other types of adaptive behaviors -play a significant role in having friendships, employment or education typical of one's cognitive abilities, and general independence (Farley et al, 2009). Many adolescents and adults with ASD have difficulties with life skills such as cleaning, cooking, and hygiene (Balfe & Tantam, 2010) or other aspects of daily living such as sleeping (Limoges et al, 2005;Oyane & Bjorvatn, 2005), healthy or flexible eating, managing money, shopping, and driving or taking public transportation (Geller & Greenberg, 2010) .…”

“…In countries like Sweden, where more formal support is provided, it appears that the majority lives independently but still may depend on services (Cederlund et al, 2008;Engström et al, 2003). Yet independent living involves taking responsibility for one's day-to-day affairs such as managing personal finances, gainful employment, and buying clothes for oneself, and in these respects a large minority, if not majority, of adults with ASD in Britain (Howlin, 2000;Howlin et al, 2004) and the United States (Farley et al, 2009) attain at least a moderate degree of independence. Generally, adults with ASD achieve adulthood milestones such as steady employment and living by oneself or with a partner or children later than neurotypical adults, and are unlikely to achieve independence during the traditional college-going years (Marriage et al, 2009).…”