Anne M. Roux

Services for adults with an autism spectrum disorder.

The need for useful evidence about services is increasing as larger numbers of children identified with an autism spectrum disorder (ASD) age toward adulthood. The objective of this review was to characterize the topical and methodological aspects of research on services for supporting success in work, education, and social participation among adults with an ASD and to propose recommendations for moving this area of research forward. We reviewed the literature published in English from 2000 to 2010 and found that the evidence base about services for adults with an ASD is underdeveloped and can be considered a field of inquiry that is relatively unformed. Extant research does not reflect the demographic or impairment heterogeneity of the population, the range of services that adults with autism require to function with purposeful lives in the community, and the need for coordination across service systems and sectors. Future studies must examine issues related to cost and efficiency, given the broader sociopolitical and economic context of service provision. Further, future research needs to consider how demographic and impairment heterogeneity have implications for building an evidence base that will have greater external validity.

Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder

This study examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of postsecondary young adults with an autism spectrum disorder. We assessed living arrangements since leaving high school. Compared with young adults with other disability types (learning disabilities, intellectual disabilities, or emotional disturbances), those with an autism spectrum disorder were more likely to have lived with a parent or guardian and least likely ever to have lived independently since leaving high school. Members of the autism spectrum disorder group were less likely to have ever lived elsewhere and more likely to live under supervision since leaving high school compared to persons with emotional disturbances and learning disabilities. Group differences persisted after controlling for functional ability and demographic characteristics. Correlates of residential independence included being White, having better conversation ability and functional skills, and having a higher household income. Further research is needed to investigate how these residential trends relate to the quality of life among families and young adults.

Use of cancer control referrals by 2-1-1 callers: a randomized trial.

BACKGROUND Callers to 2-1-1 have greater need for and lesser use of cancer control services than other Americans. Integrating cancer risk assessment and referrals to preventive services into 2-1-1 systems is both feasible and acceptable to callers. PURPOSE To determine whether callers will act on these referrals. METHODS In a randomized trial, 2-1-1 callers (n=1200) received standard service and those with at least one cancer risk factor or need for screening were assigned to receive verbal referrals only, verbal referrals + a tailored reminder mailed to their home, or verbal referrals + a telephone health coach/navigator. All data were collected from June 2010 to March 2012 and analyzed in March and April 2012. RESULTS At 1-month follow-up, callers in the navigator condition were more likely to report having contacted a cancer control referral than those receiving tailored reminders or verbal referrals only (34% vs 24% vs 18%, respectively; n=772, p<0.0001). Compared to verbal referrals only, navigators were particularly effective in getting 2-1-1 callers to contact providers for mammograms (OR=2.10, 95% CI=1.04, 4.22); Paps (OR=2.98, 95% CI=1.18, 7.54); and smoking cessation (OR=2.07, 95% CI=1.14, 3.74). CONCLUSIONS Given the extensive reach of 2-1-1s and the elevated risk profile of their callers, even modest response rates could have meaningful impact on population health if proactive health referrals were implemented nationally.

Disability Identification and Self-Efficacy among College Students on the Autism Spectrum.

The number of youth on the autism spectrum approaching young adulthood and attending college is growing. Very little is known about the subjective experience of these college students. Disability identification and self-efficacy are two subjective factors that are critical for the developmental and logistical tasks associated with emerging adulthood. This study uses data from the National Longitudinal Transition Study 2 to examine the prevalence and correlates of disability identification and self-efficacy among college students on the autism spectrum. Results indicate nearly one-third of these students do not report seeing themselves as disabled or having a special need. Black race was associated with lower likelihood of both disability identification and self-efficacy.

Characteristics of Two-Year College Students on the Autism Spectrum and Their Support Services Experiences

Approximately 80% of college-going youth with autism in the US attend a 2-year college at some point. These community-based, universally accessible institutions offer both academic and vocational courses and have experience in teaching diverse learners. This study used nationally representative survey data from the National Longitudinal Transition Study-2 to describe the characteristics and services experiences of adults with autism who attended postsecondary education after high school, focusing on those who attended a 2-year college. Over 60% of those who attended 2-year colleges had little to no trouble conversing or performing functional skills like counting change during high school, and extracurricular participation was common (93.8%). Most 2-year college attenders (85.7%) were able to navigate to places outside the home versus 43.9% of those with no postsecondary education. Over half took vocational courses at 2-year colleges, while one-quarter pursued academic study. Less than half (48.6%) of those who disclosed their disability to the school reported receiving services, accommodations, or other help. Most (87.3%) felt they received enough help, but fewer (68.0%) felt the services they received were useful. Future research should delineate specific needs of students with autism in 2-year college settings and identify what supports are needed to improve persistence and completion rates.

Social-Ecological Correlates in Adult Autism Outcome Studies: A Scoping Review

The transition into adulthood is a critical period in the life course that shapes later outcomes. Many adults on the autism spectrum fare poorly across a wide range of quality of life indicators. Understanding the multilevel factors that influence transition outcomes is necessary to develop strategies that promote better outcomes. In this scoping review, we characterize the use of social-ecological factors in adult autism outcome studies, identify understudied areas of research, and provide recommendations for future research. We conducted a literature search for studies in which the relationship between social-ecological factors and transition outcomes among transition-age youth with autism was assessed. We organized variables used in studies across 5 levels of influence: family-, interpersonal-, institutional-, community-, and policy-level factors. Our findings reveal that both breadth and depth of social-ecological factors usage in autism outcomes studies is limited because of the narrow inclusion of variables across social-ecological levels, the overreliance on a limited number of national data sets, and the overall lack of variation in research design. We propose 9 recommendations to inform the development of multilevel studies.

Commentary on employment supports research

The authors of “Vocational support approaches in autism spectrum disorder: A synthesis review of the literature” have written a commendable review that finds a very weak academic evidence base about employment supports. Although the majority of a typical lifetime is spent in adulthood, we know the least about this stage of life—by far—when it comes to autism spectrum disorders (ASDs). The authors make thoughtful suggestions for advancing this important area of research. We wish to offer complementary ideas rooted in life course and public health perspectives. These perspectives shift the focus of attention from the individual to the social level of analysis, shine light on measurement ideas seldom discussed in employment intervention research, and offer a set of research approaches that could help advance this area of inquiry. In contrast to the dearth of research on vocational supports, many ASD program innovations are happening outside of academia (Autism Speaks, 2012). An outpouring of grassroots efforts and billions of public dollars for services each year aim to foster better outcomes for those affected by autism. In real-world settings, the problem is less about a shortage of effort than a shortage of processes for learning from effort. Our ability to meaningfully measure efforts and outcomes at program and population levels is woefully underdeveloped. Imagine if a large corporation tried to operate without financial statements—without a clear picture of sales, expenditures, customer satisfaction, or assets. The company would quickly go under. Yet, this state of affairs is commonplace in many autism services. At a population level, we are almost completely unable to clearly describe the resources expended on services or measurable indicators of the population outcomes we hope to influence— including the employment rate. Tracking sales and inventory, mining “Big Data,” visualizing performance indicators with data dashboards, and the huge toolbox of measurement approaches used in continuous quality improvement practices are transforming the landscape of business and health-care administration around the world. Wise organizations invest in creating measurement feedback loops to learn from experience in ways that help improve future performance. We need a corresponding measurement revolution for ASD services, including employment supports. An abundance of opportunities exist for collaborating with community agencies to create practice-based evidence. Scientists with advanced training in measurement and analysis methods are uniquely positioned to be useful in this endeavor. A public health approach emphasizes collaborating for success. When it comes to solving the employment problem, our most important partners are employers, adults on the autism spectrum, and family members. A collaborative partnership perspective underscores learning with others to collectively understand and solve problems. Finally, a life course public health lens also demands investigation of the social–ecological context of employment. Our developmental theories generally support a biopsychosocial framework for understanding disability (World Health Organization (WHO), 2001). However, the vast majority of scientific thinking and inquiry in the field of autism hovers at the biological and psychological levels. Unemployment is not just an individual predicament, it is a social problem. Social problems cannot be solved entirely through a focus on modifying individual behaviors and abilities, although this is certainly an important pursuit. We also need to examine the social environment and the impact of interventions targeting a community or policy level. We enthusiastically endorse the Review authors’ call for more research on the role of workplace peers in fostering job success. Other topics of inquiry could include social networks, workplace and social policies, and identifying ways successful employment programs benefit businesses and communities in addition to those on the autism spectrum. Can we challenge ourselves to study the strengths and benefits people on the autism spectrum contribute to workplaces and society? Employment is also a highly dynamic social phenomenon that is continually changing. For example, the longterm growth in the percentage of jobs in the service sector (where every job description emphasizes interacting with others) is uniquely disabling to people for whom social interaction is problematic. Furthermore, the racial and Commentary on employment supports research 518996 AUT10.1177/1362361313518996AutismShattuck and Roux research-article2014

What would help low-income families?: Results from a North American survey of 2-1-1 helpline professionals:

Almost half of young American children live in low-income families, many with unmet needs that negatively impact health and life outcomes. Understanding which needs, proactively addressed, would most improve their lives would allow maternal and child health practitioners and social service providers to generate collaborative solutions with the potential to affect health in childhood and throughout the life course. 2-1-1 referral helplines respond to over 16 million inquiries annually, including millions of low-income parents seeking resources. Because 2-1-1 staff members understand the availability of community resources, we conducted an online survey to determine which solutions staff believed held most potential to improve the lives of children in low-income families. Information and referral specialists, resource managers, and call center directors (N = 471) from 44 states, Puerto Rico, and Canada ranked the needs of 2-1-1 callers with children based on which needs, if addressed, would help families most. Childcare (32%), parenting (29%), and child health/health care (23%) were rated most important. Across all childcare dimensions (e.g. quality affordable care, special needs care), over half of the respondents rated community resources inadequate. Findings will help practitioners develop screeners for needs assessment, prioritize resource referrals, and advocate for community resource development.

State-Level Variation in Vocational Rehabilitation Service Use and Related Outcomes Among Transition-Age Youth on the Autism Spectrum

Employment outcomes for transition-age youth with autism spectrum disorder (TAY-ASD) following Vocational Rehabilitation (VR) services declined between 2002 and 2011; although a few states showed significant progress. We examined inter-state variation in VR service use and outcomes among TAY-ASD in 2014–2016, finding significant differences in the percentage of TAY-ASD who received VR services, entered VR services during secondary school, had timely development of an employment plan, and were employed at VR exit. Inter-state differences remained significant after adjusting for the influence of individual-level demographics and state-level unemployment and fiscal capacity, suggesting other factors influence variation. Future research should monitor whether changes in the VR program, via the 2014 Workforce Innovation and Opportunity Act, move the needle on VR outcomes for TAY-ASD.