Outcomes in adults with autism spectrum disorders: a historical perspective

“The Emerging Adulthood Theory (Arnett, 2000) posits that the transition period between adolescence and adulthood is characterized by identity exploration and individualism.”

“The rest of the studies in this category assessed overall outcomes with variations of the OOR scale (Eaves and Ho, 2008; Howlin et al., 2004).”

“In contrast to the traditional developmental tasks perspective, ‘emerging adults’ were more likely to say that being responsible for oneself, establishing a personal value system, relating to parents as adults, and becoming financially independent were markers of becoming an adult (Arnett, 2001).”

“These two scales, as in Billstedt et al. (2005), were more specific than Rutter et al.’s criteria, but still required some subjective interpretation. For example, on the Present Language Developmental Level (PLDL) scale they defined very good as being able to ‘communicate freely with a rich vocabulary’ and on the Pres…”

“Eaves and Ho (2008) assigned outcome categories to a sample of 48 young adults with ASDs in British Columbia.”

“These category definitions are inherently vague, and only one study to our knowledge has reported on the reliability of this index (Lotter, 1974). Rutter et al.’s phrases ‘normal or near-normal social life’ and ‘potential for social progress’ require a great deal of investigator interpretation. However, Rutter et al.’…”

“Twenty-eight years later, Kanner (1971) gave a follow-up account of each of those 11 individuals.”

“Farley et al. (2009) conducted a follow-up with 41 adults with autism who had an IQ of 70 or greater to see if outcomes would be better for individuals with average or near-average cognitive abilities.”

“Although some researchers had written descriptive accounts of adults with autism, Rutter et al. (1967) were the first to explicitly define criteria for adult outcomes, using the labels good, fair, poor, and very poor.”

“Similar to Lotter et al.’s (1974) and Rutter et al.’s (1967) findings, Gillberg and Steffenburg (1987) found 59% to have a poor or very poor outcome and 43% living in an institution.”

“As individuals with ASD from lower-income families are likely to have less access to services (Shattuck et al., 2011), including these groups would potentially result in poorer outcomes than what is typically reported (Shattuck et al., in press; Taylor and Seltzer, 2010).”

“’s criteria found slightly more optimistic results in overall social functioning (Engstrom et al., 2003; Larsen and Mouridsen, 1997). Larsen and Mouridsen (1997) found that just under half (44%) of their sample had poor or very poor outcomes, and 22% were employed. The sample consisted of 18 individuals originally dia…”

“However, with changing economic and social conditions, these achievements are no longer the norm in the general population of young adults (Furstenberg et al., 2005).”

“As individuals with ASD from lower-income families are likely to have less access to services (Shattuck et al., 2011), including these groups would potentially result in poorer outcomes than what is typically reported (Shattuck et al., in press; Taylor and Seltzer, 2010).”

“Along these lines, Billstedt et al. (2011) reevaluated the sample from their 2005 study, adding measures of the relationship between the person and his/her environment.”

“For example, advancements in early intervention therapies may result in more positive outcomes in adulthood (Ballaban-Gil et al., 1996).”

“, Psycinfo) to identify studies on adult outcomes for individuals with ASD; and (2) we conducted backwards citation searches of recent reviews focused on outcomes of adults with ASD (Gillespie-Lynch et al., 2011; Howlin, 2005; Howlin and Moss, in press; Taylor, 2009) (see Table 1 for a summary of included studies).”

“, Psycinfo) to identify studies on adult outcomes for individuals with ASD; and (2) we conducted backwards citation searches of recent reviews focused on outcomes of adults with ASD (Gillespie-Lynch et al., 2011; Howlin, 2005; Howlin and Moss, in press; Taylor, 2009) (see Table 1 for a summary of included studies).”

“With objective (3), for example, Halpern (1993) suggested that it is important not only to meet societal norms and expectations of adulthood, but also for the individual and his or her family to feel that personal needs and goals have been achieved.”

“The authors attributed their high employment percentages to a high demand for labor in Japan’s thriving economy, rather than study differences such as a broader definition of employment (Kobayashi et al., 1992).”

“Criteria like the OOR scales reflect a focus in the sociological literature on the achievement of certain ‘developmental tasks’ as criteria for success in adulthood (Fussell and Furstenberg, 2005).”

“Esbensen et al. (2010) examined a sample of 70 adults with ASD and comorbid intellectual disability, finding that 61% fell into the two lowest independence categories (comparable to the poor and very poor OOR categories).”

“Esbensen et al. (2010) examined a sample of 70 adults with ASD and comorbid intellectual disability, finding that 61% fell into the two lowest independence categories (comparable to the poor and very poor OOR categories).”

“As in Larsen and Mouridsen (1997), the cognitive functioning of this group is not representative of all of those diagnosed with ASD.”

“One such suggestion is for the addition of a broader and more dynamic framework in measuring outcome success, which takes into account the fit between the person and his or her environment (Ruble and Dalrymple, 1996).”

“These category definitions are inherently vague, and only one study to our knowledge has reported on the reliability of this index (Lotter, 1974).”

“, Psycinfo) to identify studies on adult outcomes for individuals with ASD; and (2) we conducted backwards citation searches of recent reviews focused on outcomes of adults with ASD (Gillespie-Lynch et al., 2011; Howlin, 2005; Howlin and Moss, in press; Taylor, 2009) (see Table 1 for a summary of included studies).”

“Recent studies have begun to explore predictors of outcome and the current needs of adolescents and adults with ASD (e.g., Farley et al. 2009; Howlin et al. 2013; see Henninger and Taylor 2013 for review).”

“The adequacy of outcomes in adulthood should ideally take into account the gap between a given outcome and the preferences and goals of the individual (Henninger and Taylor 2013).”

“870 autism 23(4) such as intelligence quotient, language abilities, comorbid conditions (Farley et al., 2009; Henninger and Taylor, 2013; Howlin et al., 2004; Kirby et al., 2016; Magiati et al., 2014), environmental factors including family support, access to interventions and the availability of support services (Hol…”

“Recent research on long-term ASD outcome has begun to scrutinize the meaning of ‘‘positive outcome’’ for the individuals and their families (e.g., Henninger and Taylor 2013).”

“This emphasis on transition coupled with data on the poor post-school outcomes for individuals with ASD (Billstedt et al. 2005; Henninger and Taylor 2013) indicate the importance of research exploring experiences of higher-functioning individuals as they exit the K-12 education system.”

“…an intellectual disability (i.e., IQ[ 70; Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators and Centers for Disease Control and Prevention (CDC) 2014), adult outcome in ASD remains poor (Henninger and Taylor 2013; Howlin and Moss 2012; Roux et al. 2013).”

“…disorder (ASD) are substantially under-represented in employment and postsecondary education (PSE) relative to those in the general population and those with other disabilities (Eaves and Ho, 2008; Henninger and Taylor, 2013; Howlin et al., 2004; Shattuck et al., 2012; Taylor and Seltzer, 2012).”

“In fact, even individuals with ASD who have completed college have reported significant challenges with underemployment and chronic unemployment (Attwood, 2007; Barnhill, 2007; Hendricks & Wehman, 2009; Henninger & Taylor, 2012; Hurlbutt & Chalmers, 2004; C. Schall, Targett, & Wehman, 2013).”

“…adolescent deterioration, and the failure of individuals with autism to successfully transition into adult levels of adaptive functioning (e.g., low rates of independence from parents, high rates of unemployment, and social isolation; Henninger & Taylor, 2013; Howlin, Moss, Savage, & Rutter 2013).”

“As in other adult follow-up studies (see Henninger & Taylor, 2013; Levy & Perry, 2011; Perkins & Berkman, 2012, for reviews), at a group level the findings were generally positive with IQ for most individuals remaining relatively stable over time, and language skills improving.”

“…of functional language in 70%–80% of most samples, reports indicate generally low levels of vocational and social engagement even in relation to overall cognitive, language, and adaptive skills of many adult participants (see Henninger and Taylor, 2013; Howlin and Moss, 2012; Levy and Perry, 2011).”

“Although the two recent descriptive reviews that focused on the OO measure (3, 4) were based on a systematic literature search, the search process was not fully documented in the reports and no attempt was made to summarize findings across studies using meta-analytical approaches.”

“These findings of very poor employment outcomes hold regardless of the intellectual abilities of the individual with ASD (Hendricks and Wehman 2009; Henninger and Taylor 2012; Hurlbutt and Chalmers 2004; Schall et al. 2013).”

“Moreover, this approach is based on recent evidence that young adults with ASD attain more positive outcomes if they contribute to the community through employment or volunteer work (Henninger and Taylor 2013; Taylor 2009).”

“Unfortunately, for the most part, they remain unemployed, underemployed, or chronically change low-wage jobs through adulthood (Cimera and Cowan, 2009; Cimera et al., 2012; Henninger and Taylor, 2013; Schall et al., 2014; Shattuck et al., 2011, 2012).”

“Indeed, authors have previously identified the need for interventions to target behaviours that may be more responsive to change, such as living skills (Henninger and Taylor 2013; Smith et al. 2012).”

“They fare worse than peers with other disabilities (including speech–language impairment, learning disability, emotional disturbance, and intellectual disability) on indicators of postsecondary education, employment, and living independently (Friedman et al., 2013; Henninger and Taylor, 2013; Howlin and Moss, 2012; Or…”

“Historically, studies that have highlighted such variability in the outcomes of autistic people have largely focused on objective QoL (see Henninger & Taylor, 2012 for a review).”

“In fact, even individuals with ASD who have completed college have reported significant challenges with under-employment and chronic unemployment (Hurlbutt and Chalmers 2004; Barnhill 2007; Hendricks and Wehman 2009; Henninger and Taylor 2013; Wehman et al. 2013).”

“This high level of parental worry is not surprising as outcomes are often poor during adulthood, with low rates of employment and independence (Henninger & Taylor, 2012; Howlin et al., 2004; Howlin & Moss, 2012), Cooresponding Author: Leann E. Smith, Waisman Center, University of Wisconsin-Madison,…”

“In general, employment, residential independence, and social participation are three key areas of adult outcome in the autism literature [4].”

“2016; Henninger and Taylor 2013; Hong et al.”

“Thus, overall outcomes for individuals with ASD based on themetrics of becoming self-supporting, living independently, and developing a network of friends have been characterized as poor for the majority of individuals with ASD (Henninger & Taylor, 2013).”

“Henninger and Taylor (2012) scrutinized the historical literature to learn how researchers have defined successful adult outcomes for individuals with ASD.”

“Indeed, orthodox normative approaches to autistic adult outcomes, those focused on rates of employment or postsecondary education, living independently and having friends, have repeatedly shown that autistic people struggle in this transition (Henninger & Taylor, 2012; Wyn & Woodman, 2006).”

“…due to (a) the call for new perspectives on success in adulthood in groups both with and without disabilities (Arnett, 2000, 2001; Halpern 1993; Henninger & Taylor, 2013; Ruble & Dalrymple, 1996; Taylor, 2009) and (b) the existing literature on parents’ many transition concerns for youth with…”

“Some other recent studies have highlighted the generally poor social outcomes for very many adults.(8,9) These high rates of social disadvantage are reflected in the heavy financial burden associated with autism, with some estimates suggesting that the lifetime per capita societal cost of autism is in excess of $3 mil…”

“integrate variable- and person-centered approaches to identify groups of individuals with autism spectrum disorders (ASD) who have similar profiles of change over a period of 10 years across three critical domains of functioning: maladaptive behaviors, autism symptoms, and daily living skills.”

“Lastly, this study does not account for the subjective experiences of individuals with ASD, which are influenced by elements like the “fit” between a person and his or her environment [Henninger & Taylor, 2013].”

“However, the outcomes many students with ASD aspire toward in the areas of employment, postsecondary education, and community life remain elusive for a large proportion of young people (Henninger & Taylor, 2012).”

“The majority of the extant literature exploring outcomes of young adults with ASD has taken one of two broad approaches to outcome measurement, either using an overall outcome rating or focusing on prediction to singular variables (Henninger and Taylor 2013).”

“Autistic people repeatedly fare badly on normatively conventional life goals, including friendships, intimate relationships, and workplace success [32–34], and it is often concluded, as such, that Autistic people have a poor quality of life [though see 35, 36].”

“Approximately two thirds of individuals with Autism Spectrum Disorders (ASD) have co-occurring ID (Dykens and Lense, 2011), and the presence/absence of ID is considered to be the most critical factor affecting outcomes in this population (Howlin et al., 2004; Henninger and Taylor, 2013).”

“…of ASD treatments need to be developed with some urgency as the lack of standardized adult measures is also reflected /mpr 111 in the paucity of adult intervention research generally (Bishop-Fitzpatrick et al., 2013; Henninger and Taylor, 2013 ; Howlin and Moss, 2012; Shattuck et al., 2012).”

“…high level of heterogeneity, a broad range of interpretations, frameworks, and predictors of individual differences in outcome measures have been proposed, each bringing relevant and specific aspects of ASD into focus (Anderson et al., 2014; Burgess and Gutstein, 2007; Henninger and Taylor, 2013).”

“However, it provides more specific and practically relevant information for those involved in transition planning for individuals with ASD due to its currency and the increased rigor of this body of literature (Henninger & Taylor, 2013).”

“While the rising prevalence of adults with ASD led to more research on the transition experiences of these individuals, existing studies often rely on narrowly defined measures of adulthood to indicate whether a transition is successful or not (Henninger & Taylor, 2013).”

“Researchers suggest that adults with ASD often fail to achieve at the same level as their neurotypical peers (Henninger and Taylor, 2013).”

“Employment satisfaction, overall happiness, and other variables related to quality of life are addressed in this study in order to better understand the outcomes that adults with elevated ASD traits experience (Henninger and Taylor 2013).”

“Additionally,severalstudiesreportedverypooremployment outcomesforadultswithASDregardlessof their intellectual abilities (Hendricks & Wehman, 2009; Henninger & Taylor, 2013; Hurlbutt & Chalmers, 2004; Wehman, 2013).”

“Follow-up studies of ASD children to adulthood suggest that roughly 10 to 15 per cent of adults with ASD have a good adult outcome.(25) There is now also an emerging literature on ‘optimal’ outcomes in ASD.”

“Studies consistently find that many individuals with developmental disabilities have poor outcomes based on these conventional benchmarks (Henninger and Taylor, 2012; Howlin and Moss, 2012).”

“Impairments in executive function are proposed to underlie many functional deficits associated with ASD and contribute to interpersonal and occupational difficulties (Henninger and Taylor, 2012).”

“Intellectual functioning has been the most heavily studied predictor of adult outcomes, with studies finding that low IQ is the strongest predictor of poor adult outcomes in ASD (Henninger and Taylor 2013; Seltzer et al. 2004).”

“Future studies also need to consider the subjective perspectives of young adults with ASD on their success in achieving their life goals of employment and education, independence, and friendships in conjunction with parents,’ teachers,’ and support providers’ viewpoints (Henninger and Taylor 2012).”

“Available evidence indicates poor health status for autistic adults relative to the general population (Schendel et al., 2016) as well as low levels of employment, education, independence, and social integration (Henninger and Taylor, 2013).”

“Several recent reports have highlighted the very small number of publications specifically focusing on adults (BishopFitzpatrick et al., 2013; Henninger and Taylor, 2013; Piven et al., 2011; Shattuck et al., 2011).”

“2012; Henninger and Taylor 2013), individual characteristics such as IQ, adaptive behavior, autism severity, and behavior problems 1 3 were not significantly different between those with and without disruptions after high school.”

“Existing research on parents’ perspectives on the future for their autistic adolescent has largely focused on specific measurable outcomes, such as being employed, having friendships, and living independently (Henninger and Taylor, 2013).”

“Increasing attention has been paid to studying the outcomes of individuals with ASD during adolescence and adulthood in Western countries [9].”

“Although many of the concerns related to growing old with ASD are common to individuals with other developmental or mental health problems, there are factors that differentiate this group from others with chronic disability (cf. Henninger & Taylor, 2013; Levy & Perry, 2011).”

“…et al., 2013) Making and sustaining friendships Considerable difficulties in WS (Einfeld et al., 1997; Rosner et al., 2004) and in autism (e.g., Henninger and Taylor, 2013) Pragmatic language Relative deficits in WS (Laws and Bishop, 2004) and in autism (e.g. Baird and Norbury, 2016) Joint…”

“…poor postsecondary outcomes compared to their peers without disabilities, including high rates of unemployment and underemployment, and continued difficulties in adaptive behavior and social relationships (Henninger and Taylor, 2012; Howlin et al., 2004; Roux et al., 2013; Shattuck et al., 2012).”

“Also, we observed that, unlike those with ASD, the non-ASD group participants tend to pay minimal attention to user guide pages without reviewing the instructions carefully, expecting that they could understand the necessary functionalities as they practice and experience with the app.”

“targeting the needs of young adults with ASD [13].”

“…deleterious effects across a variety of domains (e.g. language, play, daily-living skills) which, in the absence of intervention, present obstacles to forming social relationships, educational attainment, employment, and autonomy throughout life (Chamak & Bonniau, 2016; Henninger & Taylor, 2012).”

“Many individuals with ASD have intellectual disability (ID) in addition to social impairment [7].”

“Longitudinal studies indicate that many adults with ASD lack independent skills, have few social networks, and are often dependent on family for support (Henninger & Taylor, 2012; Howlin, Goode, Hutton, & Rutter, 2004).”

“Individuals with ASD may exhibit symptoms from mild to severe, depending on where they lie on the spectrum [2, 3], and this may also affect long term outcomes such as independent living, employment social and independent functioning [4].”